Journal History
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Sunday, February 28, 2010 8:34 PM EST
HAPPY 14th BIRTHDAY ALEX!!!!!!!!!!!!!!!!!!!!!!!!!!! Alex had a fun birthday. He had a few friends over for a sleepover and they went to the movies.
We've been buried in snow this winter. In addition to the 2 feet of snow we got in December we got 3 feet (in two storms) in one week in early February setting a new record. We found out that we aren't the only one's who have never seen this much snow. There were a few days that we couldn't get out before the plows came around but thankfully we didn't need to get out. We did lose power for most of one day, but it could have been worse. Since the kids have missed so much school it looks like they're going to extend the school year. Unfortunately we already have airline tickets so Alex will miss the last 4 days of school. I'm hoping that they aren't doing much those days and that he won't be penalized. Emily is out the week before and her school is adding a few days back in during the rest of the year so she won't miss any days. We really hope that Spring is around the corner!
On the medical front, Alex has been healthy! He goes to Georgetown next week and he will see the endocrinologist, ENT, and BMT doctors all in one day. I love it when we can get everything done in one visit :-) Alex goes to Duke in April to see the dermatologist and Dr. K. I'll update more after these visits. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Friday, January 29, 2010 12:20 PM EST
Hi Everyone -
Alex is doing much better. His Pulmonary functions are almost back to normal but he's still doing his inhalers as a prophylactic measure. Alex has been complaining on and off that his ear hurt but when we go into clinic they say it looks fine. I took him to the ENT this week and viola, a reason for the pain, a blocked tube. At this point we're not sure if we can get it to unblock or if it will need to come out. We also don't know if they take it out if they will put a new one in. It seems if it's not one thing it's another!
It's the end of the first semester of school and it looks like Alex is going to make the A/B honor roll again. He's been working hard and staying after school a LOT to get caught up in all his classes. He said it was sad to say goodbye to his elective teachers. He really liked both of them.
Last month we had a freak snowstorm that dropped two feet of snow. The government even shut down for a day! It was an interesting experience for us Californians. Steve insisted that he could drive out in it since he has 4 WD. I pointed out that he doesn't have a two foot clearance on his car! Emily had a blast playing in the snow and digging snow tunnels. I posted pictures on Facebook. Friend me if you haven't already :-)
That's the gist of what's going on here. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Saturday, December 12, 2009 9:42 PM EST
Hi Everyone -
Tuesday update...
Alex's tests from yesterday look good. At this point we think that whatever bug he picked up is just taking forever to go away. He's still on antibiotics and his inhalers so hopefully he will feel better soon!
Alex is having a rough time and we've been to Georgetown four times in the last three weeks. He started with a sinus infection and that led to a cough that he can't shake. He's been on strong antibiotics and a regular inhaler and a steroid inhaler and he's still coughing. He had a coughing fit on Thursday and couldn't catch his breath. It was pretty scary. He has a chest CT and a Pulmonary Function Test scheduled for Monday to help determine what's going on. They're trying to rule out lung GvHD which is quite serious so please pray that's not what we're dealing with.
The first night of Hanukkah was last night and thankfully we got home from the hospital in time to make some latkes to celebrate. The kids plunked themselves down in front of the presents and were trying to decide what to open last night. Emily has a large present that she is convinced is an ironing board. Why she thinks we would buy her an ironing board is beyond me. It's actually a foam sled. Now we just need some more snow :-)
I'll update when I have more information. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, November 12, 2009 11:03 AM EST
HAPPY 7th RE-BIRTHDAY ALEX!!!
Wow, it's hard to believe that it's been 7 years since Alex's transplant. We were at Duke last week for his yearly studies While Alex is doing well in general his chronic graft vs host disease is still active so he needs to stay on immune suppressants. Since he's on immune suppressants, he still needs monthly blood draws. Since he needs monthly blood draws, he still needs his port. He still takes more pills than then he'd like and he has his daily shot of growth hormone which he is now giving to himself. We're thrilled to be at the point we're at, but we're ready to move on and leave all the medical crap behind us. Unfortunately it doesn't look that that's going to happen anytime soon.
Alex's current list of meds...
Prednisone - immune suppressant
Cortef - replaces what he doesn't make
Imuran - immune suppressant
Lisinopril - for high blood pressure
Allipurinol - for high uric acid
Diflucan - antifungal
Acyclovir - antiviral
Penicillin - antibiotic
Pepcid - heartburn/ excess acid
Calcium - for low bone density
Magnesium - replaces what his body leaches
Pentamadine - prevents pneumonia
Lupron - delays puberty
Growth Hormone - makes him grow
Alex received the H1N1 vaccine while at Duke and even with motrin and benadryl his arm totally swelled up. Emily told him that he looked buff and to tell the girls it was muscle. I love her sense of humor!
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Tuesday, October 13, 2009 9:24 PM EDT
Hi Everyone -
Happy October! We've finally gotten into the school routine here. I felt like all I did the first few weeks of school was fill out paperwork. The occasional piece of paper still comes home but at least it's slowed down. Alex is quite happy with the middle school and is doing well so far. Emily likes her new school as well. Both of the kids managed to get colds the first week of school but seemed to get over them pretty fast. They're both fighting something now. I keep hoping that it's allergies since it's been windy but I think this is wishful thinking on my part.
Alex went to Georgetown yesterday for his monthly check-up. His hemoglobin is at an all time post transplant high of 11.6 :-) His blood pressure has been high and his nephrologist (kidney specialist) has been asking us to get a kidney ultrasound for the last few months. We finally got it done yesterday and I hand delivered the CD of the images to the nephrologist today. He also wants an echo cardiogram before he decides what medication to use. Alex is already on medication for his blood pressure but the doctor wants to decide if we should increase the dosage of what he's on or switch to something else. There are pros and cons to both approaches. Aren't there always??? We'll get the Echo done at Duke when we go for Alex's 7 year post transplant testing in November. Yep, you read that right, 7 YEARS! Way to go Alex.
We're enjoying the cooler temperatures that Fall brings. Most people think we're nuts be we really enjoy all four seasons although I could do without the bugs and humidity in the summer :-) Alex and I love the red leaves and we saw plenty on the way to the hospital yesterday. So enjoy the season! Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, September 3, 2009 10:41 PM EDT
Hi Everyone -
It's hard to believe that it's been 8 years since we heard the words that changed our lives forever..."your child has cancer". Since September is Childhood Cancer Awareness Month I wanted to post some facts...
- One in every 330 Americans develops cancer before the age of twenty.
- On the average, 36 children and adolescents are diagnosed with cancer everyday in the United States.
- On the average, one in every four elementary schools has a child with cancer. The average high school has two students who are current or former cancer patients.
- Cancer is the leading cause of death by disease in children under the age of 15 in the United States.
- Childhood cancers affect more potential patient-years of life than any other cancer except breast and lung cancer.
- The causes of most childhood cancers are unknown. At present, childhood cancer cannot be prevented.
- Childhood cancer occurs regularly, randomly and spares no ethnic group, socioeconomic class, or geographic region. In the United States, the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65 years.
- Despite these facts, childhood cancer research is vastly and consistently underfunded.
Please consider donating to help find a cure... www.curesearch.org CureSearch is the National Children's Cancer Foundation.
Now I'll get off my soapbox and tell you about Alex. He had a good time at Camp Simcha and made over 100 glass pieces in the glass fusion workshop. He wants to go back next year as a "Stamper" which is part staff and part camper. The director says he's to young so we'll see. Alex came back from camp with a nasty upper respiratory infection. It took him a few weeks to shake it but he's healthy just in time for germville, I mean school to start next week. He has orientation at the middle school tomorrow.
We had a change of plans at the end of summer for our family vacation. We were going to go south but it was just too hot for Alex. So we postponed our trip to Duke and the South Carolina beaches and headed to Maine to vacation at "Camp Martenson", our friends' lake house. Aside from the drive which was LONG, it was really relaxing and fun.
Now we're gearing up for school, the Jewish Holidays and visits from both Grandma and Nana who will be happy to note that there is now a bed in the guest room thanks to our movers, Steve and his brother Richard.
Since I don't know when I'll update again, I say Shanah Tovah. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Friday, July 31, 2009 3:00 PM EDT
Hi Everyone -
I guess it's time for an update! We made it to California at the end of June, but barely. Alex's fever broke the day before we left but he still felt really bad. I can relate to how bad he felt since I got the dreaded virus too. Alex was tested for the flu, but was negative so we know it was just a very nasty virus. His doctor at Georgetown wasn't thrilled with us leaving town but said we could go if I promised to call her twice a day with an update. I felt really guilty calling her since she was on vacation but she insisted.
The kids figured out that we saw 32 people while we were in the sunshine state although I'm not sure how they came up with that number :-) Emily and Alex both had a good time with their friends and I was able to see a few people as well. Steve was out there the first week we were but he was working and then he came home and we stayed an extra week.
When we got home, the kids got ready for their first camps of summer. Alex went to Fantastic Friends Weekend. He got to take his best friend with him. He had a great time but I don't think he got any sleep. I picked him up and then I took him and Emily to Camp Friendship. Emily had a great time but Alex really didn't want to be there and came home early. I think he was just exhausted. When I picked him up he slept on the way home. When we got home he went back to sleep, got up for dinner and then went back to sleep. It took him a few more days to really catch up on his zzzzzzzz's. Emily came home from Camp Friendship for two nights and then went to BRASS Camp. Both kids have been home this week but are on the move again next week. Alex is going to Camp Simcha for two weeks and Emily is going to Camp Louise for two weeks. If you'd like to send them mail you can at the following addresses...
Alex Schwab
C/O Camp Simcha
430 White Road
Glen Spey, NY 12737
Emily Schwab
Bunk # 20
Camp Louise
24959 Pen Mar Rd
Cascade, MD 21719
Alex goes back to Georgetown when he gets back from camp and he goes to Duke at the end of August for his 7 year post transplant studies! We hope everyone is enjoying summer. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Friday, June 19, 2009 3:09 PM EDT
Hi Everyone -
My baby graduated elementary school yesterday. He is really excited to go to middle school in September. CONGRATULATIONS ALEX!!!
Graduation yesterday, fever today. Alex came over to give me a hug this a.m. and he was HOT. I asked him if he felt o.k. and he said he had a headache and was tired but he felt fine. We had our normal Georgetown visit today so they checked him out. The social worker said he could have written his own orders. He told them exactly what he needed when we walked in :-) They gave him a does of IV antibiotics and told us to go back tomorrow a.m. for dose #2. His temp is pretty high - 101.3 and if it goes up to 102 they want to admit him so think cool thoughts!!!
Since my last update, we've been really busy. Alex's Bar Mitzvah went really well. He did an awesome job and we are so proud of him. We enjoyed having our family and friends in town to celebrate with us. Alex and his friends had a great time at his video game party on Sunday too.
At the end of May we went to Hershey, PA for the weekend compliments of the Cassey Cares organization. We stopped at Gettysburg on the way up and the kids enjoyed that as well. I think Alex and Emily would like to move into the Hershey factory. They keep asking when we can go back. Emily and I went on the Coal Cracker ride and they got a great picture of us screaming. I'll have to see if I can get it up on the web site at some point along with some Bar Mitzvah and graduation pictures. Since I'm technically challenged I might have to wait for Steve to do it.
Emily is going to a new school in the Fall too. We decided to send her to the Jewish Day School. She's already made a few friends there and is really excited about the change. We went to a picnic there last weekend and Emily went off into the woods and ended up coming home with a tick. She found it when she went to shower. Steve and his steady hand got it out. The doctor said that since it was in her less than 24 hours that her chance of getting a dreaded disease is slim. There never seems to be a dull moment around here!
Our summer is shaping up to be BUSY but we're all looking forward to the change of pace. We hope everyone enjoys the lazy days of summer. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, May 4, 2009 1:38 AM EDT
Hi Everyone -
Since my last update Alex has been to Duke and Georgetown and things are stable. Alex is now off chemo for the skin cancer!!! His dermatologist says that he looks good. Alex's blood pressure has been high and we don't really know why so we went to a nephrologist (kidney doctor) to try to figure it out. I wasn't thrilled with adding ANOTHER specialist to the list of doctors Alex already sees but we do want to figure out what's going on. They wanted Alex to do a 24 hour urine collection which is always a joy. We thought that we had it in the bag, I mean jug :-) and then Alex forgot and used the toilet in the middle of the night so we had to start all over. He was so frustrated that he went and closed all the toilets in the house and put a trash can on top of them so that he wouldn't forget.
We're gearing up for Alex's Bar Mitzvah on Saturday. He insisted on seeing his tutor yesterday but she cut the session short and told him he was ready. Now if only Steve and I could say the same! We're looking forward to seeing all our family and friends this coming weekend.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Sunday, March 29, 2009 5:33 PM EDT
Hi Everyone -
Somehow a month has gone by so I figured I better update although sometimes I wonder if anyone reads this since y'all haven't been signing the guestbook!!!!!!!!
Alex has had his ups and downs this month. A few days before his last appointment at Georgetown I noticed that his hands were shaking. Since this can be a symptom of the Thalidomide they decided to do another EMG test. This test is extremely painful so Alex was not the least bit happy. I wasn't thrilled either since it's really hard to watch them shock your child. I almost lost it when the test was over and Alex whispered to me, "you let them hurt me". How I wish I could have taken his place! Of course this test was at Children's and I went a different way this time and still got lost downtown. I give up! Unfortunately the test showed some neuropathy in both his hands and feet so we had to stop the Thalidomide. The problem with stopping it is that his GvHD could flare. Since it takes one to two months to get out of his body we feel like we're waiting for the other shoe to drop.
Alex came home with a low grade fever last Thursday and he still can't shake it. I really hate when things are "brewing". He seems a bit better today but his temperature is still elevated.
Alex had his rescheduled birthday party a few weeks ago and had a lot of fun with his friends. Steve dropped the kids at the movies and then they came back here for a sleepover. Alex thinks he's now old enough to roam the mall by himself but at this point I'm only comfortable letting him go to the movies. He also thinks that since he's been watching PG-13 movies that now he should be able to watch R movies. I don't think so!
Alex has an appointment this week at Georgetown and then we go to Duke over our Spring Break for a check-up with the dermatologist and Dr. K. We're excited because our fellow transplant buddies the Bingham's are also going to be in Durham that week. They stayed with us last summer on their way back from Duke but Alex was away at camp and didn't get to see them so he can't wait.
That's it for now. I'll try to update before the end of April :-) Thanks for checking in on us and PLEASE sign the guestbook!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Sunday, March 1, 2009 10:39 AM EST
HAPPY 13th BIRTHDAY ALEX!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Alex is feeling much better. We took him out last night to the Cheesecake Factory for a birthday celebration. He asked me what day we were celebrating his birthday this year since the 29th isn't on the calendar. I usually go with March 1 since if it wasn't a leap year that would have been his b-day. Alex thinks it's the 28th since he was born in February. Since we're both *technically* correct I figure he's old enough to decide when he wants to celebrate :-) I can't believe Alex is officially a teenager...
Alex's transitional IEP meeting is tomorrow if we don't get a snow day. I have three people coming with me as his advocates. I told him the allied forces will be there. I could probably fill a room with people that want to help. We go back to Georgetown on Friday for Alex's regularly scheduled monthly visit. We'll also see the endocrinologist that day so think growth!
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, February 23, 2009 8 :37 PM EST
Tuesday Update -
Hi Everyone -
Alex has the flu but we are home! We have to go back tomorrow for more IV antibiotics to cover him for a possible line infection, but at least we can sleep on our own beds tonight. We didn't get much sleep last night. They didn't bring his evening meds until after 11:00 p.m. Then they decided to put him on fluids overnight so he had to get up at 1:00 a.m. to use the bathroom. At 3:00 a.m. he apparently was tired of the alarm going off on his pulse-ox monitor all night so he beeped the nurse and told her that he was breathing but he couldn't sleep and could she please change the parameters to stop the beeping. Then at 6:00 a.m., he woke up to use the bathroom and was bright eyed and bushy tailed and couldn't go back to sleep. I think we'll both crash early tonight.
Thanks for all the love and prayers. Don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Hi All -
Just wanted to let you know that Alex is in the hospital. He had a dentist appointment today and we pre-medicated him but we came home and an hour later he had the chills and had spiked a 101 degree fever. I packed a bag and headed into the clinic with him. They drew blood cultures and a flu culture. The doctor is not convinced the fever is from the dentist, but I'm NEVER taking Alex to the dentist again!!! They had considered sending us home and having us come back for IV antibiotics on Tuesday and Wednesday but his fever spiked higher buying him at least a 3 day pass to the Goergetown Resort. I'll update as I know more.
Jill
Friday, January 30, 2009 12:29 AM EST
Hi Everyone -
I thought I'd give an update from the far and frozen East. We had a few snow days this week so the kids only had 1.5 days of school. They're not complaining though! Emily had a great time playing in the snow. Alex enjoyed watching it snow from the comfort of inside the house. The snow was great until things turned icy. We had freezing rain and our court looked like an ice rink. We had no salt and no shovel so Steve was out there with a broom. He did have a hand spade :-) He's decided to hit Home Depot this weekend so we'll be prepared for the next storm coming in at the beginning of next week.
We went on a ski trip with Special Love over Martin Luther King weekend. When we got there it was minus six and while we were driving it got down to minus nine. It warmed up to zero on Saturday. Emily skied for an hour and Alex lasted about a half hour. Steve skied until 2:00. Sunday was a balmy 25 so I was ready to get my bathing suit to go snow bathing :-) Emily did great skiing on Sunday and rode the chair lifts. The kids had fun with their friends who went on the trip during the nightly activities. We were pretty exhausted when we got home.
On the medical front things are stable. Our major issue right now is trying to get Alex's growth hormone approved by our new insurance company. They want a copy of his Stim test that was done at CHLA a few years ago but the Endocrine department there is like a black hole and so far we haven't had any luck. We now have some reinforcements from Duke on the case so hopefully we will be able to get more medication soon. Thankfully we have a little of a backlog so Alex is still getting his medicine.
Wherever you may be, we hope you're warmer than we are!!! Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Wednesday, January 7, 2009 8:30 PM EST
Hi Everyone -
Happy 2009! Alex and Steve were at Duke this week. The dermatologist wants to start weaning Alex's chemo for the skin cancer. While this is good news, it feels like Alex's security blanket is being taken away. I know my fellow travelers will totally understand what I'm saying! Dr. K thought Alex looked good and doesn't want to make any changes at this time. She's not convinced that the Thalidomide is causing nerve damage and would like to repeat the Nerve Conduction/EMG test the next time we're at Duke. So we continue to take one day at a time and pray that Alex stays healthy.
We enjoyed our visit with my mom, brother and sister-in-law. After they left we spent some time with our cousins in this area. The kids love to get together and hang out with their cousins. We went for dinner one night and didn't get home until 11:00 since we couldn't drag them out of there. Our next guest is my friend Linda who is arriving from California any minute! Since she is like Martha Stuart I better go finish cleaning up my house.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Tuesday, December 16, 2008 10:56 AM EST
Hi Everyone -
It's come to my attention that I haven't updated in over a month! I don't think I can remember everything that's happened in the last month since I can barely remember what I did yesterday. But, I'll try...
Alex had an appointment at Georgetown before Thanksgiving. I had a really nasty cold so Steve took him and it turned out to be a disaster. Steve didn't know that you have to insist on seeing Alex's doctor when another doctor tries to see you. I think Alex's doctor is really busy and the other doctors try to "help" her out by stealing her patients. Since Alex's case is so complicated we don't like to see other doctors. There is no way you can get someone up to speed on what's going on in ten minutes so it's basically like not seeing a doctor at all. This was problematic since Alex was having a few issues including ear pain. To top it off, his ENT had emergency surgery and couldn't see him. At least Alex got the meds he needed before coming home.
We went to Wisp Ski Resort for Thanksgiving compliments of the Believe in Tomorrow Foundation. Emily and Steve went skiing and Alex and I went snowmobiling. Emily was able to join a Girl Scout troop and go dog sledding. She earned a patch for participating in the four hour program. Nine inches of snow fell on the day we arrived so there was plenty of snow to play in. Emily liked sledding and actually crashed into me and knocked me down which I think was the highlight of her trip :-) We had a great time but ended up leaving a day early since Alex's ear was really bothering him.
Upon our return from the mountains I took Alex to the ENT who sucked a bunch of fluid out of Alex's ear and gave him some steroid ear drops which seemed to really clear up the inflammation that was causing the pain. This was a good thing since the following week Alex went to Orlando on a Chai Lifeline trip. He left on Sunday and returned on Wednesday. He had a fabulous time with all his camp friends. His counselor won him a life size Shamu. I joked with him that they were going to need to buy a seat for it for the way home. They ended up checking it as luggage but since it was so large it didn't come out with the regular luggage and Steve and Alex forgot it. I called the airport and they had it so I had to drive over an hour each way in the pouring rain the next day to rescue Shamu. All I could think was that this thing had better be really big or I wasn't going to be happy. It was big all right, so big that it didn't fit in the trunk of my SUV! I got it into the back seat so it kept me company on the long drive home.
In other news, Alex is getting active in the Synagogue youth group. They asked him if he wanted a board position and he told them he wanted to be President. Unfortunately there already is a President so he's going to have to settle for something else right now. Maybe he can run for President next year :-)
Alex has an appointment at Georgetown on Friday. Emily is going to go with us to do Art Therapy. I spoke to her teacher who is all for Emily going as long as she makes up her missed school work. Alex has developed a cough so I hope it doesn't turn into anything since we're getting ready for visits from my mom, brother and his wife. Hanukkah starts on Sunday night so Alex and Emily are getting excited. Emily was actually a week off. She had been on a girl scout outing Saturday night and came home and saw the Menorah set up and wanted to know where the presents were. I couldn't figure out what she was talking about but I guess I had confused her by setting the Menorah up early.
Since I know it's going to be busy around here and I don't know when I'll next update, I want to wish everyone a Healthy and Happy Holiday Season! Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, November 12, 2008 7:44 PM EST
Hi Everyone -
I can't believe that 6 years ago toady Alex had his transplant. The thing that shocks me the most is that when I woke up this morning it wasn't the first thing that I thought about! We still feel like we're on a roller coaster ride with all the side effects and medical issues Alex has but we're thankful that he's here with us. In years past I've listed all the meds he's still on and the shots he gets and all the doctors he has to see. We still have all that to deal with but it's really become part of our life. I've often wondered when things would be normal again but I guess this is our normal and we deal with it one day at a time. When we were last at Georgetown Alex's doctor told me that he's the nicest, most well adjusted boy for all that he's been through and that it's a pleasure to know him. That's the best compliment anyone could have given him. He truly is my Hero!
Jill
Tuesday, November 4, 2008 9:57 PM EST
Hi Everyone -
Alex had his monthly visit to Georgetown last Friday. We took Emily with us so that she could enjoy the Halloween festivities too. Alex wore his shirt that said, "This is my Halloween Costume" but then he decided to dress up as a doctor. He grabbed a lab coat, borrowed a pager and clipboard and made himself a name tag. Emily was a devil. The kids went out in groups of 10 to trick or treat around the hospital. A few people told Alex that they liked his costume the best. They kids got a ton of candy and I'm trying to figure out how to get rid of some of it without them noticing. We also have a lot of left over candy since we only got one trick or treater. Alex was pretty bummed since he likes to hand out candy.
On the medical front, things are o.k. Alex's hemoglobin has been running a little low so they drew some blood for iron studies. His magnesium is also running low and they don't know why. Alex's doctor didn't like his ear again so off we went to ENT. The ENT said that it's fine, he just has GvHD in the ear canal so it doesn't look healthy. Alex does have a cough right now so we hope it doesn't develop into anything serious.
We ended up getting a cancellation for the Nerve Conduction Study/EMG at Children's Hospital today. Children's was great, but the drive wasn't. I decided that driving in downtown D.C. is as bad as driving in San Francisco. The names of streets change and then change back, there are lots of one way streets and my not so favorite round abouts. Not to mention the lanes constantly ending. Oh, and did I mention the traffic??? Alex swears we're never going downtown again. It was pretty bad. The test did confirm that he has neuropathy in his hands and feet. At this point I don't know what they're going to do about it.
That's it for now. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, October 9, 2008 9:39 PM EDT
Check out the new pictures.......
Hi Everyone -
Duvi ~ this one's for you! Sorry it's been so long since my last update. After we got back from our disastrous trip to Duke, we had all sorts of beginning of school year activities for both Elementary School and Hebrew School. Since Alex started studying more for his Bar Mitzvah I feel like we live at the synagogue.
On the medical front, the skin biopsy was negative. However there's never a dull moment around here. Right after we got back from Duke I noticed a strange lesion right next to the biopsy site and totally freaked out. I called the dermatologist at NIH and he had me send him a picture of it. He wasn't too concerned and told me to watch it. Whatever *it* was fell off.
When we were at Duke they told us to get a nerve conduction test since Alex is on a drug that can cause neuropathy to both the hands and feet. He already has neuropathy in his feet from one of the chemo's he took early on in treatment. So, they want to test his hands. Believe it or not we still don't have an appointment. Georgetown neurology was totally unresponsive so they need to send us somewhere else. So far we've left a bunch of messages but haven't heard back from anyone. It's getting pretty frustrating.
Two weeks ago Alex had ENT and Endocrinology appointments. He's been growing about an inch every three months with the growth hormone so his doctor is pleased. The shot he gets monthly to delay puberty seems to be working which will help let him grow for a longer period of time. The ENT drained some fluid out of Alex's ear and that didn't make Alex too happy. He gave Alex a steroid nasal spray to hopefully help enlarge his sinus passages. His sinus passages are smaller from the radiation and that's why he has a hard time clearing colds. The goal is to try to keep him out of the hospital this winter.
Alex had his monthly visit to Georgetown yesterday. We went in early so we could get back by the start of Yom Kippur. We ended up with an extra appointment in ENT since they didn't like the way Alex's ear looked. The ENT isn't sure why Alex's ear with the tube is draining fluid. It doesn't seem to be bothering Alex so we're going to take a wait and see approach. We did make it home in time, but just barely.
Alex's next appointment is on Halloween. He's actually happy about it since they're having a big party in clinic and he wanted to go. If he didn't have an appointment I wouldn't take him out of school for it. Georgetown has awesome art therapists that Alex loves to visit with. They've been keeping him busy painting a ceiling tile with Pokemon on it. I picked up some of Emily's pottery that she made over the summer when she went with us. They have a kiln and fired it. Alex told them they should do glass fusion since that's his big thing at camp. Speaking of camp, they have a trip to Disney World in December that Alex is planning to go on. The boys head counselor actually called me last week about it. Alex is excited to go since there will be girls on the trip :-)
That's it for now. Thanks for checking in and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!
L'Shannah Tovah ~
Jill, Steve, Alex and Emily
Monday, September 8, 2008 8:14 PM EDT
Hi Everyone -
We're at Duke today and tomorrow and we had a horrible day today. It started off when we went to our favorite coffee place and it was GONE! So, we got some bad coffee somewhere else and headed into clinic. We got there at 8:45 and signed in. Then the insurance person started badgering me for our co-pay which we don't owe since we've met our out of pocket deductible. I didn't have a check book with me so I finally gave her a $20 bill and told her to call the insurance when they opened in CA and that I wanted my money back. After this rigmarole they finally called Alex back to check him in and draw his labs. On today of all days his port decides not to draw. It flushed fine. They put TPA in his line and sent us down to Pulmonary for his PFT since he would never make his appointment later in the day. When we went back upstairs we were quite happy that the TPA worked and they could draw blood. At this point they hooked Alex up to his IVIG. Since they're never exactly sure how much volume is in the bag they figured we'd be late for Alex's dermatology appointment. At some point Alex decided to take a nap from his Benadryl and about 20 minutes later they decided they could do his Pentamadine. So, I had to wake Alex. He was not happy and kept growling at me. For those of you that have had to wake a kid on Benadryl, I know you totally understand! After Alex got his Pentamadine he got his Lupron shot. His IVIG finished and they de-accessed him and we headed off to the dermatology appointment about 30 minutes late. They have a tram that runs from Duke North to Duke South and today of all days it wasn't running. So Alex hobbled along complaining his leg hurt and he kept growling. When we got to dermatology they weren't too happy that we were late. Our nurse in BMT had called and explained the situation and I also told them what happened. We then waited 1.5 hours to see the doctor. Just when we thought our horrible, no good, very bad day was coming to a close, the doctor decided he didn't like one of the spots Alex has and he wanted a biopsy. At this point the growling got louder. The resident who did the biopsy was really good with Alex so he didn't growl at her, he saved that for me. As we headed back to Duke North we realized that we never got the chest x-ray they ordered. So, we'll have to get that tomorrow. Alex also has an echocardiogram in the morning before we wait to see Dr. K. We hope tomorrow is a smooth day so we can hit the road for home at a reasonable hour. I'll stop griping now!!! Thanks for checking in on us.
Jill and Alex
Wednesday, August 13, 2008 4:03 PM EDT
Hi Everyone -
Alex got back from camp last night. He had a wonderful time this year and really liked his counselor. He told me that he didn't want to come home and that he didn't miss me but then he asked to snuggle :-)
We went to Georgetown today. Everything looks good except that Alex got a cold at camp and his throat is still inflamed and his ears won't pop. They were going to put him on a stronger antibiotic at camp and then they didn't so his doctor told us to start it today. Next month we're going to be at Duke when Alex is scheduled to go to Georgetown so we'll go back to Georgetown in October.
Last week our friends and fellow transplant family the Binghams were visiting. Alex was bummed that he missed them but is looking forward to seeing them next year. We had a good time and wished that we lived closer so we could see them more often.
Steve put up some new pictures so check them out. If you look at the picture of Emily closely you'll notice that the life vest doesn't fit quite right. We couldn't figure the darn thing out and at the end of our stay in Maine, Brooke's cousin informed us that it was his dog's life vest. We all got quite a laugh out of that one. We told Emily she could start barking!
We hope everyone is enjoying summer. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, July 21, 2008 9:21 PM EDT
Hi Everyone -
We're enjoying our summer. We went to Cape Cod and Maine last week and had a wonderful relaxing time. The day before we left Alex had his monthly appointment at Georgetown and all is well. Today he got his orthotics and says that they're comfy. I had to buy him new shoes and he's now wearing a size 7. Just call him Big Foot !!!
Emily is currently at BRASS Camp which is the camp for brother's and sister's of kids with cancer. We pick her up on Friday and Alex leaves for camp next Wednesday the 30th. He's really looking forward to camp again this year. For all of you who love to send him mail at camp, the address is...
Camp Simcha
430 White Road
Glen Spey, NY 12737
Alex goes to Georgetown after he gets back from camp so I'll update after that. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, June 26, 2008 9:34 AM EDT
Hi Everyone -
I took Alex down to Duke this week for a check-up. Everything is looking good. Dr. K said Alex really needs to apply his creams so we can try to get him off some of his oral medications. The goal is to treat the skin GvHD with creams and not systemically. The dermatologists were pleased with Alex's skin and feel that the low dose of chemo he is on is keeping the skin cancer in check. Alex had an MRI of his pituitary gland which is really a brain MRI and he got really nauseous from the contrast they gave him and was having a hard time. The MRI is fine though!
Emily is going to a Girl Scout Day camp this week and next week. She's not thrilled with the latrines because they have bugs in them. Apparently she didn't urinate at all the first day of camp. She's doing a bit better now and I think a lot of the drama was due to the fact that I wasn't home and was away with Alex.
That's it for now. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Saturday, June 14, 2008 10:39 AM EDT
Wednesday Update -
Alex's lungs are clear and he's feeling much better!!!
Hi Everyone -
We had a super long day at the hospital yesterday. Alex has walking pneumonia so they sent the pulmonologist down to see him. He's on a stronger antibiotic and an albuterol inhaler four times a day. I have license to whack him on the back after he has the albuterol. The whacking is supposed to break up the phlegm so he can cough it up. Sorry to be so graphic! The good news is that we were able to come home. They said we could stay home as long as his fever doesn't spike. We have to go back next Monday or Wednesday depending on how he's doing.
The rest of our ten plus hour day consisted of a visit with the endocrinologist. Alex grew a lot in the last three months and is now 4' 9". We had read that you needed to be 4' 9" to sit in the front seat of the car so Alex is thrilled. I'm still a bit concerned about him sitting in the front but he's also gained some weight and is up to 104 pounds. The endocrinologist gave him a shot for the luprolite test and then we raced over to BMT so they could draw his blood 45 minutes later. The edno also gave me the 15 mg dose of Lupron to take with us so Alex could get one shot instead of two. We still haven't figured out why they can't get the 15 mg dose from the BMT pharmacy. Alex also saw the psychiatrist and had fun visiting with the two art therapists. Of course he didn't do any art. He got his IVIG and Pentamadine and a chest x-ray. The most interesting person me met was the 3rd year med student who was following us around. He is an ALL survivor and is from Southern California. I think it was great for Alex to see someone who has made it through treatment and is now on his way to being an M.D. It was a totally crazy day at the clinic. Our nurse said they could have cloned her and it wouldn't have helped. They actually had to call in some back up nurses. We're just glad that Friday isn't our regular clinic day!
We hope everyone has a nice weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!
Monday, June 9, 2008 10:18 PM EDT
Quick Update -
Alex's cough has gotten much worse and we're now officially on a fever watch. He's hovering around 37.9 which has us totally stressed out. My inclination is to drag him to the hospital for a chest x-ray but as Steve pointed out until the fever goes higher it's unlikely that anything will show up and they'll just send us home. Please pray that Alex's fever goes down and he's not admitted to the hospital this week. We've really been looking forward to spending time with our visitors.
Jill
Friday, June 6, 2008 9:04 AM EDT
Hi Everyone -
We've had some interesting weather here. Last Saturday we had a storm come in and it got really dark outside. The thunder was really loud and the lightening was really close. Our lights were flickering on and off, Emily was crying and Alex was a bit unnerved. It was like a scene from a horror movie or so I thought until this weeks storm. Alex and I were home alone when once again it got dark. This time my power went out and I heard a loud crashing sound along with the big booms of thunder. I grabbed Alex and ran for the basement since there had been tornado warnings which I hear are unheard of for this area. We stayed in the basement for ten minutes until the worst of the storm had past. When we went back upstairs we noticed that a HUGE tree had fallen and was resting up against the french doors in the family room. When we went outside to check things out, we saw a large branch on the roof. We didn't think that had done any damage until Steve went upstairs later in the evening and noticed that water was falling from the sky in our master bath. Thankfully it's not a huge amount of water but it's impossible to get any roofers to answer their phones since we're not the only one with damage. There were downed trees all over the place. Steve was driving home when the storm hit and he saw a huge tree blocking the main road causing him to take a detour. We lost power for three hours and our wires are underground! The whole area is a total mess with closed roads and there are still a lot of people without power.
Emily was at school when the storm hit. I was waiting for her to come home on the school bus and when it was 15 minutes late I figured out that something was up and went to the school to get her. Apparently they held the buses during the storm and since her bus takes kids home from other schools earlier it was delayed. I read on the district web site that some buses were delayed 1.5 hours. A friend told me that the buses that were out during the storm were directed to stop at the nearest school and get the kids off the bus. So there were two middle school buses at out school during the storm.
On the medical front Alex is doing o.k. He has a horrible cough that he can't get rid of that is bothering him. He goes to Georgetown next week to get poked and prodded and we're doing down to Duke at the end of the month.
Starting Sunday we'll have visitors for a week. My dear friend Tamah will be here for a few days followed by my Aunt and Uncle. We're all looking forward to visiting :-)
We hope everyone has a nice weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, May 15, 2008 9:05 AM EDT
Hi Everyone -
We've been busy around here! Alex saw the dentist last week and it was an eventful trip. He had a tooth pulled, a tooth filled, two sealants and he had his teeth cleaned. I always drag my feet about taking Alex to the dentist since he could get a line infection even with the prophylactic antibiotics he takes beforehand. Thankfully he was fine!
Yesterday Alex had his monthly visit to Georgetown. He got his IVIG, Pentamadine, and Lupron shots. Once again they were unable to get the Lupron in one dose. He sees the endocrinologist next month so I'm going to bring up this issue with her. We do think it's working since it looks like Alex has grown some more. I say "looks like" since the measurement device they have at Georgetown isn't exactly accurate. While we were there Alex saw the Psychiatrist. He recommends that we do another neuro-psych test. I know we need to to do this but it had fallen off my radar with the move.
We finally got the report from NIH and the dermatologists there would like to follow Alex. I'm really happy that they will continue to see him at NIH. He will go back next month for a check up. I only saw the cover letter but the bulk of the report was faxed over to Georgetown and Alex's doctor there and Dr. K at Duke need to discuss it and decide how we should follow their recommendations.
In other news, Alex's Hebrew School class has been collecting money for charity known as Tzedakah and last week they voted on where the money should go. Alex had suggested the Leukemia and Lymphoma Society's Pennies for Patients and they won the vote. How cool is that???
Emily had fun on her caving trip to Lincoln Caverns but I don't think anyone got much sleep! I can't believe my baby is going to be nine on Tuesday. Happy 9th Birthday Emily!!!!!!!!!!!!!!!!!!
We hope everyone is having a great week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Friday, May 2, 2008 5:18 PM EDT
Hi Everyone -
Well, Alex got the dreaded cold. He hasn't been able to go to school all week. Today he was complaining about sinus pressure so we might need to switch to a stronger antibiotic. We'll see how he is in a few days and decide if a change is necessary. This cold really knocks you out. One day this week I had to wake Alex at noon so he could take his meds.
Emily left today for Girl Scout overnight in Pennsylvania where they're going caving. She and all her little friends were very excited last night when all the cars were loaded with their belongings.
We hope everyone has a nice weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, April 17, 2008 9:40 PM EDT
Hi Everyone -
Alex had a long day at Georgetown yesterday. The day started off with it taking us longer to get to the hospital because the Pope was in town and traffic was diverted to our route. Alex got his IVIG, but they switched brands on us and Alex was feeling pretty nauseated last night and this morning. I called the clinic this morning and asked them to call in a script for Zofran (anti-nausea med) which seemed to help. It's not good to switch brands of IVIG and they had told us they could order Alex's brand. I'm assuming since IVIG is in short supply that it costs a lot more to get a brand that they don't stock. So, they would like to switch people to the brand they do stock. I'm not sure if we'll try it once more and see if giving Zofran for 24 hours does the trick or if we'll go back to the old brand.
Alex got his Pentamadine no problem, but the one Lupron shot turned into two shots. Apparently they didn't have the correct dose in one shot so he had to get two shots at once in his legs. They did say that they will try to order the one shot dose for next month. Last month Steve took Alex over to Endocrinology and the Endocrinologist happened to have a one shot dose so Alex was able to get it. The pharmacy where the BMT clinic got it from did not have the one shot dose. So, we had more drama. At that point Alex just waned to leave and go home but they had changed our morning ENT appointment to the afternoon so we had to go over there and wait awhile to see the ENT. Alex's ears look good and we don't have to go back to the ENT unless Alex has a problem. It was 4:45 when we got out of there and I had visions of it taking forever to get home with traffic being diverted but we made it home by 5:30 which wasn't too bad considering the time of day.
Emily had her expander put in on Monday and I have to stick my hand in her mouth with a "key" and crank it twice a day. Emily came down with a cold/fever and now I've got the cold part of it. I do wash my hands before and after I stick them in her mouth so I'm not a happy camper. Let's hope Alex doesn't get the dreaded germs.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Sunday, April 13, 2008 11:27 PM EDT
Hi Everyone-
Alex was at NIH (National Institute of Health) all week. It was definitely an educational experience! Monday Alex registered for his GvHD Study. The nurse who had us sign the consents thought he was 18 for about 20 minutes. I couldn't figure out why she was telling him about the consent when I had to sign it but I figured since he was the one who was going to get poked and prodded that it was o.k. Finally she asked how old he was. Apparently one of the doctors had told her Alex was 18 and she said that she didn't think he looked like he was 18 but she didn't want to insult him if he was 18. Alex thought it was a hoot and was telling everyone all about it. After we signed his life away, he had an Echo and a Bone Density Test. It was pretty funny but he fell asleep during the Echo. He was tired from getting up at 6:00 a.m., but personally I don't know how he could fall asleep during the test with all the "goo" on him.
Tuesday started out with a chest CT. Then Alex went to the clinic and had 19 vials of blood drawn. We stopped to re-fuel with some hot chocolate before heading to the dermatologist. The dermatologist spent 1.5 hours looking Alex over and ended up taking a small biopsy on his tummy. Alex wasn't too thrilled about more pain and torture but he handled it like the champ he is. Steve had asked if the dermatologist thought Alex was an interesting case and I wasn't so sure since he was so low key the whole time he was examining Alex. Apparently Alex was quite interesting since the dermatologist tracked us down on Wednesday and asked us if Alex would like to be the subject at Grand Rounds on Thursday. More on that later.
Wednesday started off with a Pulmonary Function test. Then it was off to the eye clinic. It does not appear that Alex has GvHD of the eye which is good. After that we had lunch with our new friend who we met at BRASS Camp weekend who works at NIH. Then Alex saw the Rehab doctor. She recommended that Alex have physical therapy. We also need to get Alex some orthotics. He had outgrown the old ones he had before we left California.
Thursday started out with Grand Rounds. Alex was in a room and groups of 5 or 6 med students, residents or doctors came in to look at him. They weren't allowed to ask Alex any questions and a few times we had to tell Alex to stop talking since he was giving out too much information. It was hard for the med students and residents not to ask questions since it is constantly drilled into them to get a case history. It was hard for Alex to keep his mouth shut since he loves to tell everyone his life story :-) After an hour of being looked at we were free to go. Everyone who looked at Alex then met to try to come up with a diagnosis. I heard later in the day that nobody figured out that he had a transplant and had GvHD. Alex saw the pain and palliative care doctor next. She also felt that Alex would benefit from physical therapy and orthotics. Next up was the nutritionist. I don't think she gave us any info we didn't already know. Our last appointment after lunch was with dentistry. We saw two dentists and they both agreed that Alex had "interesting" teeth. They said that he does have a tooth that needs to be pulled and they did agree that it would be best if Alex were seen at Children's Hospital in D.C. so we'll have to make an appointment to visit yet another new place. I didn't get the results of any of the scans, tests or blood work but they said they would get that info to Alex's doctor at Georgetown before our appointment there next Wednesday.
Emily had a good time at BRASS Camp weekend. The theme was Spring Training for the Olympics. She keeps telling us that BRASS Camp is hosting the Olympics this summer and we keep telling he it's not the "real" Olympics. Needless to say she is looking forward to going to BRASS Camp this summer.
We hope everyone has a good week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, March 26, 2008 3:44 PM EDT
Hi Everyone-
Alex and Emily went to the orthodontist yesterday. Alex isn't a candidate for braces since the roots of his teeth are really short from all the radiation he had. If they were to put braces on his permanent teeth could fall out! They gave us a referral to Children's Hospital for the dental group there. If we can get rid of all the plaque and keep it away with a Sonicare toothbrush Alex might be able to get an extender that would make more room in his mouth so some of the teeth could come in straighter. Part of the oral hygiene problem is due to the radiation. Apparently the radiation kills the salivary glands and when you have "dry mouth" it can eat away at the enamel of your teeth. I knew Alex's mouth was a mess, but I didn't know the extent of the mess. He does have a consult with dentistry at NIH when we go for the GvHD study so maybe they will have some other options as well.
Emily needs and extender since there isn't room in her mouth for some of her permanent teeth to come in. They tried to take impressions and it was not a pretty site. At one point I thought they were going to have to call 911 since she was so hysterical that she wouldn't let them get the gunk out of her mouth and she was all red in the face and gagging. She ended up throwing up. I can't wait to go back next week for more impressions! Once they get the extender in her mouth it will stay in for 9 - 12 months. The were able to get spacers in yesterday and she was complaining they hurt today. Poor baby!
We're going to the Ringling Brothers Circus at the Verizon Center tonight compliments of an organization called Special Love. Emily is also going to go to their weekend camp this weekend for brothers and sisters of kids with cancer. She's excited about both events. I also found out that she got into a two week Girl Scout Day Camp and the one week Girl Scout overnight camp for the summer. She's one busy kid :-)
We hope everyone is having a good week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Saturday, March 8, 2008 8:54 PM EST
Hi Everyone -
This has been the week of medical appointments. We were at Duke Monday through Wednesday and at Georgetown on Friday. Alex's appointments went pretty well. His skin GvHD has really flared so Dr. K wants to start him on Thalidomide. She told us that the only major side effect she's worried about is possible neuropathy. If he does start to get neuropathy we'll have to stop the drug. It also takes a few months to kick in so we won't know immediately if it's going to help with the skin GvHD or not. I was concerned about starting him on the Thalidomide but she told me it's actually less toxic than some of the other drugs he's on.
We also saw the dermatologists. They were concerned that the Soriatiane that Alex is on for the skin cancer might be causing the GvHD to flare so we're cutting back his dose of that drug. They aren't sure if there are any pre-cancerous spots on his face since his face is so flaky. They prescribed a cream that has to be compounded to help clear that up so we can see what's really there. We have to go back in about three months. I told Steve that he can take Alex next time. It's a four hour drive from here and the fourth hour really does me in. I wouldn't mind driving if I could share the driving but doing it all myself is a challenge. I guess I'm just a driving wimp!
Dr. K was concerned that Alex has started puberty which isn't good. Apparently when you hit puberty your growth plates start to close and you don't grow as much. Alex really needs to put on some more height to attain a normal adult height. The Endocrinologist at Georgetown confirmed that Alex is in the middle of puberty so they need to stop it. There's a hormone injection that they can give once a month called Lupron that will halt puberty for awhile so that he can continue to grow with the aid of his nightly Growth Hormone injections. The Endo asked Alex if it was going to be a problem that he didn't shave for awhile longer. He said no but he did ask her how long it took to start puberty once they stop the Lupron. She said sometime within six months. I thought that was a very intelligent question and I wish I had thought of it :-)
There is a study going on at NIH (National Institute of Health) for Chronic Graft vs Host Disease. We've known about it for the last few years but didn't want to travel across the country to participate. Since NIH is now in our backyard we decided to go ahead and enroll Alex since all of his doctors would like him to take part in the study. It's four full days of tests and sounds pretty draining, but if it will help Alex and others that follow in his footsteps we're all for it. The dermatologists at Duke would also like us to see some of their colleagues at NIH. We're going to start with the study since dermatology is one of the consults and go from there.
Alex enjoyed his birthday. I took donuts in for his class and it just so happened that they were having a pizza party at lunch. He said they must have sung Happy Birthday to him at least five times. We had a nice dinner with some of Alex's favorite foods and we made a cake. We also took Alex out to the Cheesecake Factory the next day. Emily wanted to spill the beans so that they would sing to Alex but he said he'd kill her so she decided to keep her mouth shut. Alex said to thank everyone who sent him a birthday present and that thank-you notes will be in the mail soon!
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Sunday, February 24, 2008 7:29 PM EST
Hi Everyone -
Alex had a Day Hospital visit last Wednesday for IVIG and labs. He also saw the ENT who ended up pulling one of his tubes out of his ear. Apparently the tube wasn't in very well and it was irritating the ear canal the way it was sitting. I'm thankful that the ENT could pull it out in the office since I had visions of having to go to the OR. We've decided not to replace the tube right now and see how things go.
I was excited to see that Alex's hemoglobin had risen on it's own with no Epogen shots! I'm cautiously optimistic that his kidney's are now functioning better so that he won't need the Epogen anymore. Of course Steve had to rain on my parade and tell me that he thinks the labs were wrong. There is always that possibility, but we'll know more for sure next week when we go down to Duke and Alex has labs drawn then. He's scheduled to see Dr. K and both the pediatric and adult dermatologists. The dermatologists arranged their schedules so they could both see Alex at the same time. How cool is that?
We had our first official snow day last Friday. The only problem was that there wasn't any snow and Emily was doing the snow dance too :-) Apparently there was a wee bit of ice on the ground so the administrators decided on a three day weekend. That's our California take on it anyway. Alex's teacher actually told the class on Thursday to enjoy the weekend and she'd see them on Monday. Do you think she had insider information? Alex was a tad confused since he thought he had school on Friday.
I went to a Candlelighters volunteer training on Saturday and I knew four people there from my ALL-Kids listserv days. The DC chapter is relatively new since they broke off form the National Chapter that is here. We want to reach newly diagnosed families to lend an ear and offer them hope.
Thanks for checking in on us and don't forget to stop by on Friday the 29th and wish the leap year kid a Happy 12th Birthday!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Friday, February 8, 2008 11:00 PM EST
Hi Everyone -
Alex ended up in the hospital again. He wasn't feeling well on Tuesday so we went into clinic. His temp was around 99 so I knew something was brewing but they couldn't find anything so they sent us home. Alex woke up on Wednesday and couldn't move and his temp was 102.5 so we went back to the hospital and they admitted him. He was in so much pain that I had to wheel him in. After they gave him a dose of Fentanyl (synthetic Morphine) he felt much better! The fever broke Wednesday night so they let us out yesterday afternoon. I think that was the shortest hospital stay we've ever had, but we're not complaining. They're assuming that it was some viral bug since nothing grew in his blood cultures. Alex is pretty frustrated with all his recent hospital admissions. The problem we have is that he still has a port so any fever over 101 pretty much guarantees us a bed in jail. I told him he could get a cold, just not a fever!
Emily loved the Girl Scout meeting so she's going to join. I know absolutely nothing about Girl Scouts since I was a Camp Fire Girl. There are a few week long Girl Scout day camps in the area for summer. It's a lottery system to get in so I don't know how hard it really is to get in but we'll find out. There are a couple that looked interesting.
We're still waiting for the snow so Emily can build her snowman. We keep getting rain and it was actually in the 70's here earlier in the week. I'm told that Winter is just beginning here, so we'll see. The weather here reminds me of North Carolina where you can have a day in the 60's and then the next day it will be in the 30's.
I did manage to unpack 6 boxes during commercials while I was watching Lost last night. I still have a lot to go, but I am getting there. The problem is deciding where to put what I've taken out of the boxes :-)
We hope everyone has a relaxing weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, February 4, 2008 10:16 PM EST
Hi Everyone -
Alex is still congested from his bout with the flu. I think he's getting tired of blowing. He did see the ENT last week and he thought Alex looked good. We go back in a few weeks. He also saw the BMT doctor and she said he could see her in a few weeks as well.
We're getting settled in here. We still have a lot of boxes to unpack but I'm taking a break :-) I've met a lot of nice mom's at the school and they've been very willing to share information about the area. The one thing that blew me away last week was when we had a two hour delay to the start of school because it was raining. Apparently in parts of the county it was freezing rain so they delayed school for the whole county. Steve was almost out the door with the kids when someone called to tell me that school was delayed. Emily was overjoyed since she's really dragging with the longer day here. The other interesting thing is that people are signing their kids up for summer camp NOW. Apparently everyone goes to summer camp and if you don't sign up now all the good camps are full. It looks like the county offers a lot of fun one and two week camps.
I met a mom today whose daughter had leukemia a few years ago. Her daughter is the same age as Alex and is in the other 5th grade class at his school. She gave me a lot of Cancer resources for this area. Her younger daughter is in Emily's grade. This mom is also the Girl Scout troop leader for the 3rd grade. Emily is going to go to a meeting this week.
Another mom I know from one of my cancer lists came over today with her son who had leukemia when he was two. He's also Alex's age. The boys had fun playing the Wii while we chatted. They live at the other end of Vienna so we hope to see them often.
That's it for now. Check back again for more on the life and times of the Schwab Family in VA. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Sunday, January 27, 2008 10:28 PM EST
Hi Everyone -
Alex is feeling much better and Steve is feeling a little better. Emily spiked a high fever Friday but it was gone by Saturday. Unfortunately she has a nasty cough so she doesn't feel so great. I don't know how I avoided the plague but I'm thankful that I did.
Alex and I visited his school on Friday and met his teacher. We've decided on a modified day to try to keep him in school more. He will go two mornings and three afternoons a week. He will also have a home teacher to keep him up on what he's missing when he's not in school. I'm hopeful that this system will benefit him. He had missed half the school year since school started in September and he routinely came home early because a full day was too much for him. Alex enjoyed visiting the new school and he's excited to start on Tuesday.
I think it's going to take awhile to dig out from under all our boxes. I thought I had labeled things pretty well but it's still hard to find what I want so I have to keep opening box after box when I'm searching for something specific. I couldn't find my kitchen knives and trying to cut things with a plastic knife was driving me crazy. The most common saying around here these days is " I saw that". Of course the question is where??? We're hoping that when the kids start school we'll get back into a routine since right now things are pretty chaotic.
My mom went home from the hospital on Thursday and seems to be on the mend. I know she's thankful to sleep in her own bed and we can certainly relate to that!
We hope everyone had a restful weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Sunday, January 20, 2008 9:15 PM EST
Wednesday Update -
We were able to come home last night. Sorry I was too tired to update with that news. I was trying to find bedding so we could all crash and then I had to deal with all of Alex's meds. In addition to his daily pile of pills he's on Tamiflu and two strong antibiotics. The problem with getting the flu when you're immune compromised is that it can turn into a bacterial infection.
Alex's port is working fine. He said that they gave him a heart attack and a really sore port from all the pokes. When the surgeon came back I told him exactly where to access and the needle went in fine and the port drew and flushed fine. Crisis averted!
Our furniture and boxes are all here. Steve still has the 101 degree fever so we're assuming he has the flu as well. He wasn't too happy that I wouldn't let him sleep in his own bed last night but I figure I better try to stay healthy to take care of him and Alex. Emily is coming home later and she told me she's excited to have her furniture and toys in her room.
My car came in yesterday and when Steve was driving off with it he got a call that his car was in so we'll go get that this morning. I had shipped my car two weeks ago and Steve shipped his last Thursday so we were a bit surprised but happy :- )
Thanks to all our cousins for helping out during this difficult time. Also thank you to our Realtor for helping out with the unloading yesterday and for all the yummy food. It was so nice to come home to a meal last night!
Jill
p.s. - Auntie Lynda and Uncle Howard, We saw a young looking Jack dog roaming around in the woods behind our house. There's no fences here so I don't know who he belongs to yet.
Monday update - Alex's port stopped working last night. After repeated attempts to re-access and TPA it still wasn't working. The surgeon came up and when he took the dressing off I noticed that all the pokes were in the wrong place! No wonder the port isn't working. The surgeon said he will come back later and try to access it himself. If it still doesn't work we have to decide if we should replace it or just take it out and use IV's. There are pro's and con's to both.
Steve went home with a fever today. Alex has been fever free since this a.m. and says that the flu is gone and now he just has a bad cold. If he stays fever free overnite they will let him go home tomorrow afternoon. They need to run the IVIG tomorrow while they still have IV access. He's not too happy about the IV in his hand but is being a champ about it.
Our truck driver called this a.m. to say that he will deliver our stuff tomorrow. No word on my car.
Jill and Alex ( in jail)
Steve (home in bed)
Emily (off having fun with her cousins)
Hi Everyone -
We made to Virginia!!! I wish I could say that our trip was uneventful, but Alex spiked a high fever Thursday morning. After a call to Dr. K we changed his antibiotic to a stronger one and gave him some Tylenol. That seemed to keep the fever down to around 100 all day Friday when we flew. Friday night Alex started coughing and by Saturday a.m. his fever was up again and he was feeling pretty bad. We checked out of the hotel and drove the five minutes to our house. Steve had an air mattress there from his January 3rd trip and Alex promptly fell asleep. About three hours later I decided I better check on him and he was burning up. His fever was up to 102.3 We called the on-call doctor at Georgetown and they admitted him directly to the unit. His fever spiked up to 103.3 last night. His chest x-ray was normal but his nasal sample came back positive for the flu! I have to say that was a surprise. We don't know if he got the flu because the flu shot didn't take due to his immune suppression or if this is a strain not covered by the shot. We've all been pretty close so I hope the rest of us don't come down with it. They're also trying to rule out a secondary infection.
We were having some beds delivered yesterday and they hadn't arrived when we were getting ready to leave for the hospital. We were trying to figure out who should go and who should stay since there was absolutely no food in the house and not even a paper cup to get a drink of water. Whoever stayed would be without wheels. Thankfully the truck pulled up just as we were ready to leave and then we all headed out. Emily did pretty well at the hospital until around 8:00 when she decided she wanted to go home NOW! Steve took Emily home and called me because we only had one towel in the house and he wanted to know what to do since he needed to bathe her. I told him to share! I was able to pick up a few things today to tide us over until we get our stuff. Steve made a grocery store run too. Emily went off with her favorite cousin this morning and he came down with some bug today so lets pray that she doesn't get anything.
To top all this off my mom is in the hospital again and she's on IV antibiotics too. I don't know how long Alex or my mom will be in the hospital for. Please pray for a quick recovery for both of them.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Sunday, January 13, 2008 11:23 PM PST
Hi Everyone -
I figured I better update since I'm not going to have easy Internet access for the next week. We're still packing and the mover's come tomorrow. I hope we're done before the wee hours of the morning. It's weird to think that this is the last night in our house and we'll be on our way to VA soon. We're going to stay with my mom for few days before we fly out.
Alex had a hard week. He kept complaining his ear hurt so I took him to the ENT on Tuesday. At that time he said his ear looked good but Alex was still complaining about ear pressure, popping and pain when his ear started to drain fluid on Thursday. Supposedly the only time the ear should drain fluid is with an infection since he has tubes. Since the fluid was clear and he had no fever Dr. K said to just keep a close eye on him. Thankfully today he says he feels fine. Steve had visions of getting off the plane in VA and heading for the hospital!
We asked the kids if there was anything special they wanted to do before leaving Manhattan Beach. Emily asked to go to Disneyland and the American Girl Store. Alex asked to go to breakfast at Uncle Bill's Pancake House, a famous Manhattan Beach restaurant. With the help of friends we were able to pull it off at the last minute. Thanks Tamah, Zakkai and Krishna! We're all sad to close this chapter on our lives but are looking forward to good times ahead.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, December 31, 2007 6:35 PM PST
CHECK OUT THE NEW PICTURES ADDED LAST WEEK!!!!!!!!!
Hi Everyone -
Alex had his last visit to CHLA (fingers, toes, and everything else crossed) last Wednesday. He got his IVIG, labs, and saw the BMT doctor. He was quite happy to catch up with a few of his old nurses from six years ago who we normally don't see on Wednesday's. They were happy to see Alex as well. Alex also saw the dermatologist. He has new lesions on his legs and we're not sure if they're cancer or GvHD. The plan is to try a GvHD cream for a week and if that doesn't work to move on to the chemo cream. If that doesn't work and the lesions continue to grow she told us to get down to Duke as soon as we can. We aren't scheduled to go to Duke until the beginning of March.
Our packing continues and we're going crazy in "Boxville". We're trying to get a lot done right now since the movers are coming on the 14th and we don't want to have a panic attack the day before. We had to take a break from packing yesterday since my mom was admitted to the hospital for blood clots in both her lungs. She's doing o.k. and isn't in pain but she's not happy about not being able to move around. They think the clots were caused by a medication she was put on a few months ago. We're hoping she can go home on Friday.
2007 has not been the best year for our family so we hope and pray that 2008 is a new beginning. We wish everyone a happy and HEALTHY 2008! Cheers,
Jill, Steve, Alex and Emily
Friday, December 21, 2007 12:45 PM PST
CHECK OUT THE NEW PICTURES!!!
Hi Everyone -
Alex's ear tube placement was uneventful!!! The ENT put in tubes that last two to three years so Alex doesn't have to be in the OR as frequently. Alex's only complaint was that they couldn't use his port since I'm out of port needles and they didn't have any at the Surgery Center. He watched the anesthesiologist put the IV in his arm and didn't even flinch. They had cold spray but he didn't want it. I have to say I'd be all over the cold spray if it was me!
Our house closed today and we will be on our way to Virginia next month. I did have a meltdown yesterday since I don't see how I can possibly get everything we own into a box in the next few weeks. I told Steve I'm never moving again especially since our new house is three times the size of our current house.
I'm off to Emily's school holiday party. We hope everyone has a safe holiday season.
Jill, Steve, Alex and Emily
Monday, December 17, 2007 2:25 PM CST
Hi Everyone -
Well, there's never a dull moment around here. Alex's ear trouble continues. He had been complaining that he thought his tubes weren't working and it turns out he's right! I took him back to the ENT last Friday and he confirmed that the tube in his right ear wasn't working and needs to be replaced. His surgery is scheduled for Thursday at 1:00 p.m. In order to keep him healthy until the procedure I'm keeping him home from school this week but his home teacher is working with him. I think he's a little bummed about not going to school since he has this week and one week when they go back in January before we move. Hopefully we can schedule some play dates over the break with his friends. Back to more packing... the kids say the house looks like "Box City".
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, December 6, 2007 5:08 PM PST
Hi Everyone -
We had a long day at the hospital yesterday. We felt like we'd run a marathon before 10:00 a.m. Alex had his labs drawn and then we ran off to Endocrinology. Alex has grown 1.2 inches and gained 11 pounds in the last six months. I pointed out that the weight gain was in the last month but no one seems to know why Alex gained so much weight in such a short period of time. When we were done there we went back to the Day Hospital to get Alex's IVIG. Before they could hook him up the BMT doctor called for him so we ran down the hall to the BMT clinic. His BMT doctor is pleased with how well Alex looks. Back to the Day Hospital for more labs for the Endocrinologist and IVIG. After the 3 hour IVIG infusion we ran down to dermatology where they had managed to lose our appointment and had to squeeze us in. Since they had to get all his stuff together for the doctor we ran back upstairs to radiology to get a bone age x-ray for the endocrinologist. Then it was back downstairs to see the dermatologist who was pleased with Alex's skin. We get to stop the chemo cream and just continue with the oral chemo. She said that the oral chemo has worked well and really saved his life by stopping the progression of the squamous cells. When we were checking out of dermatology the radiology department was trying to find us because they lost Alex's x-ray and needed to take another one. Alex was pretty unhappy at this point but they took another quick x-ray and we were then on our way home. What a day!
Alex's ear has been bothering him since Tuesday. The BMT doctor looked at it yesterday and said it was fine. I took him to the ENT this morning because he was almost in tears from the pain and he has an ear full of puss. The ENT suctioned it out and gave him an antibiotic ear drop for a week. I'm pretty unhappy that it wasn't caught yesterday. I had told Alex that I wasn't going to take him to the ENT on Tuesday since he was going to see the BMT doctor on Wednesday. The ENT told me that some people have no business picking up an otoscope! I just feel bad that he had to suffer from ear pain for an extra 24 hours.
Hanukkah started Tuesday evening and the kids are having fun shaking all their presents in order to decide which one to open each night. I have to laugh since I did the exact same thing when I was a kid. We wish everyone who celebrates a wonderful Hanukkah :-) Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
p.s. - Pat, can you send the packing elves (or was it fairies) my way???
Monday, November 26, 2007 11:34 AM EST
Hi Everyone -
We hope everyone had a wonderful Thanksgiving. Our Thanksgiving was a bit crazy. We sold our house the day before Thanksgiving and hopped on a plane the day after Thanksgiving for Virginia to look for a house. We're happy to report that we found a great house in a great neighborhood with good schools. A lot of you had asked why we are moving and I hadn't really responded to that question. It all started back in the Spring when Steve was offered a job in Boston. I wouldn't necessarily have minded living in Boston but I was concerned about medical care for Alex. They have great hospitals there but they follow their own protocols and those protocols are not what we've been following. Fast forward a few months to Alex's diagnosis of skin cancer. At that point I wanted to move back to North Carolina. Steve wouldn't go for that so the compromise was moving to the Washington D.C. area. Since Steve is always there for business anyways it will help greatly with his travel load. Plus, we're close to Duke and Alex will be able to be seen at NIH (National Institutes of Health) for the skin cancer and Georgetown for BMT. All in all we think the move will be better for our family. It's bittersweet to leave California since Steve and I both grew up there, our parents are there and it's the only home our kids know. Since Washington D.C. is a great tourist attraction we hope to have lots of visitors. The kids friends are already planning trips to visit :-)
On the medical front, Alex is holding his own. We hope to keep him healthy through the flu season. His next appointment is on the 5th of December and he will see all his specialists plus get his IVIG.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, November 12, 2007 10:51 AM PST
HAPPY 5th RE-BIRTHDAY ALEX!!!!!!
WOW, It's hard to believe it's been five years since Alex's transplant. We wanted to do something to celebrate but Alex refuses. He will gladly tell anyone his life story but he doesn't like to acknowledge the milestones. He does like to read his guestbook entries so please leave him a message and let him know what a true hero he is!
Thursday, November 1, 2007 0:00 AM CDT
Hi Everyone-
My back went out last Friday and it's still bothering me so Steve took Alex to clinic today. He had a Pulmonary Function Test and saw the BMT doctor. The doctor wanted to draw labs but Steve said Alex was poked last week and he will be poked next week so he wouldn't let them draw labs today. Alex was happy but I'm not sure if the doctor was happy! Alex has an appointment next week with the BMT doctor, the dermatologist and he will get his labs and IVIG. I'm not convinced that the PFT was necessary, but they wanted to check Alex's lung function since he had pneumonia recently and a few weeks ago he still had something going on with his lungs. He seems totally fine now.
Emily had a fun Halloween as a hula girl. She went out with her best friend and got way to much candy. Alex wore his shirt that says "This is my Halloween costume". He hasn't been into Halloween the last few years. He gave out a few pieces of candy tonight and then wanted to watch T.V. We didn't have as many trick-or-treaters as we normally do so now I have 3 bags of candy left over and I don't want to eat it! Anyway, we hope everyone had a fun and safe Halloween.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, October 22, 2007 9:31 PM PDT
Fire Update - Our place is Arrowhead is fine for the moment. We do have ash here in Manhattan Beach so the air quality is very bad.
ENT Update - Alex's ears and mastoids are clear!!! He's still really congested but hopefully he will start feeling better soon.
Hi Everyone -
Alex made it through the weekend without a visit to the ER but he feels pretty crappy. I took him to the clinic today since he is having some mastoid pain. They gave him a dose of an IV antibiotic that will cover him for 24 hours and we're going to see the ENT tomorrow to determine if he needs a CT scan of his mastoids. Now we're wondering if the vomiting last week was from the mastoids or the chemo.
I filled out the paperwork today to get home teaching set up since he's missed so much school in the last month. When he feels up to it he will start back at school for part of the day but still get some help at home. We've been keeping up with Math but that's about it. Today he called one of his "girl" friends to find out the assignment. He's a typical boy who wants the info and wants to get off the phone but his friend evidently kept talking because he said goodbye at least five times!
On the Emily front she is just as self assured as ever. A few weeks ago she got caught wearing a spaghetti strap top to school by the principal. It's ok to wear the top as long as you have something on over it. Apparently she got hot so she took off her short sleeve shrug. About a week after that she wore a spaghetti strap top again with explicit instructions from me not to take off the shrug. She kept the shrug on until school was over. Personally I thought she should wear the shrug until we were off the school grounds but she said school was over so she was taking it off. We then went to the Friday ice cream sales where the principal was selling the ice cream. I told her to put the shrug back on but instead of doing that she goes up to the principal and says, "do you like my top?" The principal noted that she understood it was after school but I couldn't believe how gutsy Emily was!
If you haven't had a chance to check out www.runbecauseyoucan.com I highly recommend you do so!!! Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, October 18, 2007 11:43 PM PDT
Hi Everyone -
Alex had his appointment yesterday for IVIG. He also saw the dermatologist who was very pleased with how his skin is looking so we're starting up the chemo cream on his other arm and part of his face. The BMT doctor didn't like the way his chest sounded so she ordered a chest x-ray. The chest x-ray showed some streaking which is indicative of a viral infection. The plan is to go back next week unless he gets worse before then. He woke up today with a stuffy nose so now we wonder if the stuff in his lung is new or from the last infection. Alex has been nauseated and vomiting form the oral chemo so we cut back the dose and he seems to be feeling better. It seems that there's never a dull moment around here!
When we were at Duke for Alex's transplant we met an extraordinary young man named Ryan who unfortunately didn't make it. He was a gifted writer and we all urged his mom to publish a book from his writings. Well, the book is finally out and you can read about it and order the book at runbecauseyoucan.com
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, October 10, 2007 1:18 PM PDT
Hi Everyone -
Alex had labs and saw the doctor today. His counts are coming up nicely and the doctor gave him his go back to jail (school) pass. Alex actually likes school so he thought it was funny. Every time Alex ends up in the hospital I start thinking about home schooling. I know Alex needs to go to school but it is so draining to be inpatient.
We're still waiting not so patiently for our house to sell so send some good buyer vibes our way :-) Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, October 3, 2007 5:30 PM PDT
Hi Everyone -
I just wanted to let you know we're home!!! I'm going to give the IV antibiotic three times a day at home through Sunday and then de-access Alex's port. The official diagnosis was indeed pneumonia. They think we caught it really early. Alex's hemoglobin dropped to 8.1 yesterday so he got a unit of red cells. He says he feels much better and is somewhat more energetic but still not totally himself. Alex has an appointment on the 10th with his BMT doctor and for labs so we'll discuss his return to school at that time. His ANC was only 810 the other day so I'm in no rush to send him back to the germ pit!
We're all happy to be under one roof again :-) Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Sunday, September 30, 2007 6:31 PM PDT
Hi Everyone -
Alex's temperature is cycling between normal and 38.0 (100.4). The CT ruled out pneumonia so we still don't know where the infection is. They're going to do a bone scan tomorrow since he's still occasionally complaining of chest pain. The plan right now is to keep him on the IV antibiotic for 7 days. So, the earliest we can get out of jail is Wednesday or Thursday. Why do I feel like weeks just disappear???
I brought Alex his WII today and the new Sims game so he's happily building houses or something. At least the music from this game isn't too annoying :-) Alex is sick of Hospital food. He's also sick of McDonald's, the *healthy* alternative they have here in the hospital. There's a grocery store nearby so that might be my next stop.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!
Jill and Alex
Saturday, September 29, 2007 10:48 AM PDT
Hi Everyone -
Alex is fever free this morning so let's hope he stays that way! They did a CT scan last night but I don't have the results back yet. I just saw his BMT doctor in the hall and she said she'd be in soon. The chest x-ray from yesterday did show fluid in one lung. All his counts have crashed from the infection. His hemoglobin is only 8.3 and his platelets are 46. He's in pretty good spirits this morning and is happily building a lego.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!
Jill and Alex
Thursday, September 27, 2007 10:19 PM PST
Friday Morning Update -
Alex's fever went even higher to 39.8 which is about 104. He is also de-satting so they put him on oxygen. He had a repeat x-ray this a.m. and they are thinking pneumonia. I'll update again when I know more.
Hi Everyone -
Quick update - Alex went in yesterday for his IVIG and labs. Early this morning he started complaining of pain near his port and he had a slight temperature. I took him into the hospital this morning and they did cultures to check for a line infection, an x-ray to check for pneumonia and then gave him a dose of IV antibiotics. They told us we could go home but had to go back to clinic on Friday. Right before we were going to leave Alex spiked a fever of 38.6 which bought him a bed in the hospital until at least Monday. So right now he has a fever of unknown origin and feels pretty crappy. He's also pretty unhappy that he's stuck in the hospital. We hope it's a short stay. Please keep him in your thoughts and prayers. Thanks,
Jill
Saturday, September 22, 2007 8:46 PM PDT
Hi Everyone -
We finally got Alex's new chemo and it was only a $15 co-pay. CVS totally screwed up. They didn't even try to run it through insurance and just told us it wasn't covered. We told them it was for skin cancer and that Blue Shield said it was covered and did not need pre-authorization but they still couldn't manage to bill it correctly. I finally had to have Blue Shield call CVS. We're pretty unhappy with all the stress this caused us.
Anyway, Alex started on the medicine and on day three he came home early from school with a stomach ache. Since that's not one of the normal side effects they decided to give the medicine every other day instead of every day for a few weeks and see how that goes. We're also using a topical chemo on one arm. It's getting pretty red. It only attacks the cancer cells so I said that must be his whole forearm since it's all red and inflamed and it's starting to bother him to have a long sleeve shirt on it.
We saw the surgeon on Thursday and he said everything looks good. While we were waiting Alex saw his psychologist. I'm not sure what they talk about but it always helps Alex. Alex also had labs drawn to check some chemistries that can be out of whack from the new chemo. They were a little elevated but not too bad. We go back next week for IVIG and labs and we will see the BMT doctor. Since we changed Alex's immune suppressant his skin GvHD has flared on his legs. We're trying to get it under control with creams.
This is a great story about college football players signing up for the Bone Marrow Registry.
http://sportsillustrated.cnn.com/2007/writers/aditi_kinkhabwala/09/14/914/index.html
A couple of mom's from a leukemia listserv I used to be on made a youtube video...get out the kleenex
http://www.youtube.com/watch?v=AGS4yE5v9rM
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Friday, September 14, 2007 821 PM PDT
Hi Everyone - According to Alex his surgery went better than expected because he only needed to take one pain pill :-) He's not thrilled with going out in public since he has cuts all over his face and arm. It took about a week or two for him to heal from the first surgery so I think by next week he should be less self conscious. They sent the samples to UCLA for pathology and hopefully they will have it back next week when we see the surgeon. The surgeon decided to "go for it" and just removed all the suspicious lesions instead of biopsying them. They theory is that since the previous four biopsies were positive these were going to be positive too and we should just try to get all the cancer cells now. I totally agree!!! Alex is supposed to start on an oral chemo on Monday but I just found out late today that the insurance won't pay for it and it's $600 for a 30 day supply. I'm sure once I get our BMT insurance coordinator on it we'll get it covered, but we really don't have time to waste since new lesions keep popping up. Why can't anything be easy???
Adding to our stress, we put our house on the market since we're going to be moving to the Washington D.C. area. We had 50 people go through it last weekend and not much activity this week. I have to say it's a royal pain to keep everything in place and cleaned up with two kids. We just hope it sells quickly.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, September 6, 2007 8:23 PM PDT
Hi Everyone -
Alex had an appointment today with the dermatologist and the plastic surgeon. There are five spots that need to be biopsied. Three spots are on his face, one is on his arm and one is on his neck. He also has to have one or two spots excised from the previous biopsies where they didn't get all the cancer. The surgery is scheduled for Tuesday. In order to hopefully stop the spots from coming back Alex is going to need to start taking an oral chemo. After the incisions heal he will also use a topical chemo. That's the plan for now. I'll update again after the surgery.
Please keep Alex in your prayers and thoughts as he battles this new cancer. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, August 29, 2007 7:02 PM PDT
Hi Everyone -
We did make our flight home last week but have been super busy so I haven't had a chance to update. Of the three biopsies they did, they got all the cancer on two of them. The remaining one on Alex's chin will need to be excised some more. When we were at CHLA on Monday they counted another 5 spots. The plan right now is to see the dermatologist and the plastic surgeon next week. We also have to come up with a plan for what type of chemo to use, topical or oral. The type of skin cancer Alex has is really rare in kids, so rare in fact that they haven't found another documented case of it in the United States. All the experts in the field are being contacted to come up with a plan for treatment.
The kids started school today and are both happy with their teachers. Alex is really upset that he can't be out in the sun and go to P.E. with all his friends this year as planned. He had done so well in adaptive P.E. the last few years that he graduated to regular P.E. He also can't go out on the playground for recess or lunch. He stayed in the classroom today with his teacher during P.E. and helped him and he hung out with his favorite school nurse at recess and lunch.
I did take first day of school pictures and I will have Steve post them when he has a moment.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, August 20, 2007 3:39 PM CDT
Hi Everyone -
Alex had his stitches out today and we got the biopsy results. I guess I shouldn't be surprised that they all came back as squamous cell cancer, but I was hoping they wouldn't be. The plastic surgeon says we shouldn't lose any sleep over the sites he biopsied since he thinks he got most if not all of it. The bigger concern is the remaining spots that weren't biopsied. They managed to get us in to see the dermatologist tomorrow morning and then we need to see Dr. K to make a plan. We have a 3:30 p.m. flight home tomorrow so I hope we can make it.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Saturday, August 18, 2007 9:53 PM EDT
Hi Everyone -
Alex's surgery went well. They think they got all the cancer and have clean margins, but the pathology won't be back until next week. He also had three spots biopsied so he looks like he's been through a war. His face was pretty swollen but it's gone down some. The stitches will be taken out on Monday and he just wants his face to heal before school starts on the 29th.
Thanks for checking in on us. We appreciate everyone's prayers and good thoughts. Don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, August 13, 2007 9:43 AM EDT
Good Morning Faithful Followers...
Just wanted to let you know that Alex is having his surgery today to remove the squamous cell skin cancer from his face. He's also having two or three other spots biopsied when he's under the general anesthesia. He hasn't been able to eat anything since last night and his surgery isn't scheduled until 1:30. Poor kid, he's only complained once this morning that he's hungry.
More later...
Jill
Monday, July 30, 2007 9:15 PM PDT
Hi Everyone -
Just wanted to let you know that Alex got home from camp safe and sound. He has an appointment at CHLA on Wednesday so I'll update more after our visit.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, July 16, 2007 1:19 PM PDT
Hi Everyone -
Alex left for camp early this morning. He called me from his new cell phone when they landed in New York. The address there is :
Camp Simcha
430 White Road
Glen Spey, NY 12737
We had a good visit at CHLA last week. Alex got his IVIG and we saw the BMT doctor. We also saw Dr. Tishler who will refer us to dermatology and plastic surgery to deal with Alex's skin cancer. I'm not thrilled that it couldn't be taken care of before he left for camp but I'm hoping it can be taken care of when he gets back.
Emily is going to "Camp Nana" this weekend so that Steve and I can celebrate our 17th Anniversary. Emily is enjoying her summer and is having a blast swimming every day. She starts a pre-competitive class next week and is thinking of trying out for the swim team in the Fall.
We hope everyone is having a GREAT summer. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, July 9, 2007 9:54 PM PDT
Hi Everyone-
To answer the question of the week... Yes, squamous cell carcinoma is skin cancer. Alex's is "in situ" which means that it's on the surface and is highly curable. I really hate that the dermatologist told me that it's a "good" cancer to have because I think Cancer SUCKS, and there is no such thing as a "good" cancer. Right now we need to find a plastic surgeon to remove it. We had considered using a cream called Aldara, but since the biopsy showed cancer cells all the way to the margins it needs to be cut out.
We've decided to go back to CHLA for treatment. The only reason we left was due to insurance and since they're taking our insurance again it makes sense to go back. After shuffling from center to center I've come to learn that no place is perfect. Most of Alex's care the last six years has been at CHLA, so it really is home. Alex has an appointment on Wednesday and I'm hoping that they can get him in for a consult with a plastic surgeon.
Alex leaves for Camp Simcha a week from today. I'll post the address soon so anyone who wants to can send him mail. He's gotten the most mail of all the campers the last few years so I know he'd love to hear from you. Postcards are great, but cards work too :-)
We hope everyone is having a good week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, June 28, 2007 4:38 PM PDT
Hi Everyone -
Sorry it's been awhile. We've had some issues here and I just haven't felt like updating. Since inquiring minds want to know what's going on, here goes...
Alex had a skin biopsy done for a growth on his face. The pathology report came back saying it's a squamous cell carcinoma. We're getting everything sent to Duke since we're between centers at the moment. We can't stay at COH since Alex can't get his IVIG there. His Igg levels are higher than 500 which is the cut-off for giving IVIG in normal circumstances. Alex never follows the rules and we believe that he needs this drug. However, COH follows the "rules" and won't or can't give it. Dr. Rosenthal felt we should go to Duke every other month for treatment but that isn't an option. We will be checking out Children's Hospital Orange County hopefully in the next few weeks. We're still waiting to hear back about an appointment time. Dr. K has spoken to the doctor there and she said he would work with us.
Alex is doing well! He finished school and got a great report card earning him a cell phone. It's one of those pay as you go phones for emergency use, not to call and talk to his friends all day and night :-) Alex and Emily have both had a play date every day and are enjoying summer. Last weekend we went up to Lake Arrowhead with Linda, Carl and Brooke. We all had a relaxing time and didn't want to come home!
We hope everyone is enjoying the lazy days of summer. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, June 7, 2007 1:56 PM PDT
Hi Everyone -
Things are stable here. Alex goes to COH on the 12th for his monthly IVIG and labs. School is winding down with two weeks left, so there are lots of parties and minimum days. Open House is tonight and the kids can't wait to show off what they've done this year.
Emily managed to get a cold a few weeks ago and give it to me AGAIN! She is a little germ spreader. Two weeks later she finally got over it and I'm finally starting to feel better. This has been a really nasty cold so thankfully Alex and Steve have managed to avoid the plague.
We're looking forward to some lazy days of summer. We have a few weekend trips planned and Alex will go to Camp Simcha again this year. I'm really thankful that he's able to go to camp and that they can meet all his medical needs. He wanted to go to "Camp Nana" for a few days and I told him he couldn't go unless he learns to give himself his shots. Since I'm almost always around to give them I don't really think about it, but he really can't go anywhere overnight unless there is someone there who can give a shot. We're also going to Duke in August for Alex's yearly testing. We had thought about going in the Fall but decided that we couldn't really take Alex out of school since he already misses so much. We had really wanted to go to Northern CA this summer, but it's not in the cards.
We hope everyone is having a great week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, May 23, 2007 8:30 PM PDT
Quick update...Friday's labs were all up and Alex didn't need a transfusion!!! We are so relieved and hope things continue to go in the right direction.
Hi Everyone -
Alex had an appointment at COH last Thursday. The good news is that Alex's "off" labs are stable. The bad news is that the Epogen still hasn't kicked in and he will most likely need a red blood cell transfusion this Friday. We re-started Alex's IVIG so we had a really long clinic day. They told us that it's hospital policy to run IVIG over six hours. Alex usually gets it over two hours. I wouldn't have cared that much if they would have started it when we got there at 9:30 a.m., but we waited hours for it and didn't get out of there until 5:30 p.m. Then we had an hour drive home in traffic.
Alex had an endocrinology appointment on Monday. He's grown 4.5 inches in the last 18 months. Everyone is pleased with his growth. He's also starting to enter puberty which is both good and bad. It's good that his body is working. Some kids that have had all the chemo and radiation that Alex has had need "help" to start puberty. It's bad because when you hit puberty your growth plates can close. Alex had another bone age x-ray and we'll do some more labs at COH and send them to the endocrinologist at Children's.
Last weekend was pretty busy. It was Emily's 8th birthday on Sunday. She had a few friend's over for a sleep over on Saturday night. I'm not sure why it's called a sleep over since no one got any sleep. I was so tired that I took a nap on Sunday afternoon.
Alex got to test a new Wii game at Vivendi Games that will come out at the end of the year. For an hour of his time they paid him $75! The last time he went they paid him $50 so he was pretty happy. I wish I could make $75 an hour for having fun.
We hope everyone has a fun and safe Memorial Day Weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
p.s. - Hi Kate :-)
Thursday, May 10, 2007 5:38 PM PDT
Hi Everyone -
Alex had his appointment at COH today. His labs are still off.
WBC - 3.0
Segs - 28.1
Eosonophils - 24.1
HGB - 9.6
Platelets - 94
We did re-start the Epogen last Friday but it takes a few weeks to kick in so I hope he doesn't need another transfusion. We are going to give him a dose of IVIG next week to see if that helps. His Igg level is 1,500 which is above the 400 cut-off for giving IVIG, but when we switched to COH we discontinued the IVIG. We're hoping that the IVIG will help Alex's counts. Alex feels good and was running around today. While we were waiting for Alex's labs to come back Alex decided that he wanted to do all the things that his buddy Angel Lance liked to do at COH. So, we went and fed the Koi "aka" sharks. Then we went to the chimes and jumped out a few tunes. We walked through the Rose Garden and even chased a squirrel. Alex is sad but I'm thankful he's talking to me about it.
I hope all the Mother's out there have a wonderful Mother's Day. Special thoughts to our friends who will be celebrating Mother's Day without their precious children.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Tuesday, May 1, 2007 11:02 PM PDT
Hi Everyone -
Alex and I had a loooooooooong day at COH yesterday... we were there for nine hours! Alex's hemoglobin was down to 8.2 so he needed a transfusion. For some reason it took forever to get the labs back and then it took forever to get the blood. We decided to put Alex back on the Epogen shots. He's not thrilled but he can't continue to get transfusions every three weeks. His white blood cells and platelets were still stable, and his eosinophil count came down from 37 to 24 (normal is under 6) but his ANC is still low. He's borderline neutropenic which means he's at an increased risk of infections. Of course I managed to pick up a cold so I really hope I don't give it to him.
Alex loves little kids and had made a new friend at COH who is 2 1/2. A few weeks ago Alex and Lance were running around the Koi pond holding hands. It was too cute. Alex kept asking to see Lance yesterday but since I have a cold I told him it wasn't a good idea since Lance is only 138 days post transplant. When we got home yesterday I turned on the computer and checked their web site and was absolutely shocked to find out that Lance had tragically become an angel that morning. We are so deeply saddened. Julie, we're thinking about you and Matt and won't forget our buddy Lance.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, April 18, 2007 7:49 PM PDT
Hi Everyone -
Here's the long awaited update... We went to COH last Wednesday for a red blood cell transfusion. Alex's white count and platelets had continued to drop and they were very concerned. They said that if his counts didn't come up that they would need to do a bone marrow aspirate to see what was going on. Thankfully today's visit showed stable counts. They weren't better, but they weren't worse so no bone marrow. Alex was very relieved! We'll go back in two weeks and Alex will most likely need another red blood cell transfusion. We probably need to re-start Epogen, but with all that's been going on with the FDA and Epogen his doctor is reluctant to re-start it. However, it's not really good to be getting red blood cell transfusions every three weeks either. So, we're basically taking a wait and see approach. Alex feels pretty good at the moment but as his hemoglobin drops I'm sure he will feel fatigued.
I had a good time in Chicago. It warmed up a little bit so I didn't freeze. Babs - Thanks for picking me up at the airport. I really enjoyed dinner! Pat - Thanks for driving in to meet me and go to the conference. As always I wish we had more time together. Jill - It was great meeting you in person.
Apparently while I was gone Uncle Richard moved in. He was going to a conference at the Los Angeles Convention Center so he stayed with Steve and the kids and was still here when I returned. I know that Uncle Richard likes video games as much as the kids so I wasn't surprised to get home and find him playing the Wii with Alex. Emily thought it was great fun to hide under Uncle Richard's bed in the morning. You'll have to come back soon Uncle Richard, but with Aunt Kim!
We hope everyone is having a good week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Saturday, April 7, 2007 5:59 PM PDT
CHECK OUT NEW PICTURES ADDED 4/8!!!!!!
Hi Everyone -
The kids have been on Spring break this week so we went up to Lake Arrowhead. We all had fun working on a 500 piece puzzle. The kids now think they're ready for a 1,000 piece puzzle! We also went hiking in the woods but I was a bit concerned about Alex since he was looking pretty pale to me. He said he was fine but we had a clinic appointment yesterday and his hemoglobin was down to 8.2 They decided to have us go back next week for a re-check. I'm assuming that he will be down to 7.5 by Wednesday and need a transfusion. His wbc's and platelets were also down. They drew cultures for a "fishing expedition". He doesn't seem to have any symptoms of anything going on, but a virus could lower all the counts.
I'll try to update next Wednesday after Alex's clinic visit, but I'm leaving for Chicago Thursday a.m. for a BMT symposium. I'm meeting my friend Pat there and am looking forward to meeting other friends I've made on the support group listserves. I'm also going to be testing out a new website that's in development for BMT parents and Pat is going to do an interview for National Public Radio...GO PAT!
Last night Alex was commenting on how warm it was outside. Then he goes on to tell us it must be from global warming. We were totally blown away. Since I'm used to my warm weather I think I'm going to freeze in Chicago. I hope the far and frozen mid-west warms up before my arrival :-)
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!
P.S. - Our neighbor's twins are in the May issue of Child magazine. They're in an article about pancakes. If you get the magazine check it out, they're cuties.
Friday, March 23, 2007 9:10 PM PDT
Hi Everyone -
Last week Alex had an appointment at COH for a GFR which is a nuclear medicine scan of the kidney's. Alex's kidney's are working at about 70% of normal which isn't great but isn't as bad as it could be. Alex's doctor at COH is going to consult with a colleague of his at UCLA who is a nephrologist (kidney doctor). We joked with Alex that after the scan he was going to be glowing. Emily thought that was really cool and said Alex could be her nightlight! She was disappointed to find out that he really wasn't going to give off light.
This week, Alex went in for labs and to see the doctor. His hemoglobin had dropped to 8.0 so he needed a red blood cell transfusion. His last red blood cell transfusion was four years ago this month. It's really amazing to see him go from tired and not moving to a little ball of energy. We did have a long day because it took awhile to get the transfusion started and then Alex didn't feel well after the transfusion so they wanted to observe him for awhile. We left the house at 8:00 a.m. and got home at 8:00 p.m.
An interesting tidbit of info for our fellow travelers who know what CMV is. Alex is CMV negative and after transplant all the blood products he received were CMV negative. When I told Dr. R yesterday that he was CMV negative he was surprised. He was even more surprised when I told him that Steve and I are also CMV negative. He said that 95 % of the population is CMV positive and that they no longer screen blood products for CMV. I told him they did at Duke but it was four years ago. He actually called Duke and they told him that since the blood is irradiated and leukocyte depleted that it is considered "CMV safe" blood. So Dr. R said that we both learned something new yesterday!
Emily was supposed to go to overnight camp this weekend in Malibu but she picked up a cold so I didn't send her. She's not too happy about not being able to go. I took her to Disneyland on Tuesday after school, so she probably picked it up there. We went with some friends and were surprised that it was really crowded. Apparently a lot of people from other areas are on Spring break now. We went on Space Mountain and I forgot how fast of a ride it is. I thought that she was going to be crying when we got off but she was all smiles and said it was her new favorite ride and wanted to know if we could go on it again! Since Emily is a thrill seeker, I guess it's not surprising that she thought it was a blast.
Let's pray that Alex doesn't pick up Emily's cold and stays healthy! We hope everyone has a great weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Friday, March 9, 2007 1:15 PM PST
Hi Everyone -
We've had a crazy week. First off, Alex had a really fun time at his birthday party. Thanks for all the guestbook wishes and birthday cards. Alex saved up enough money to buy the Wii. I'm not sure who's having more fun with it, Alex or Steve. Last night around 10:00 p.m. I heard the little ping noise it makes and I found Steve playing the bowling game. He said it's addictive!
Alex came home from school early on Monday not feeling well. He was complaining that his mastoids hurt. He was also nauseated and dizzy. We went to COH on Tuesday for counts and everything looked good. Dr. R consulted with the radiologist and they decided NOT to do a CT scan. They changed Alex's antibiotic and sent us home. He was still feeling bad on Thursday so we went back to COH and they did the CT scan. I had visions of being admitted to the hospital so I had a bag packed. Surprisingly, Alex's CT scan showed a remarkable improvement from the one in January of 85%. So, we're still baffled as to why Alex isn't feeling quite right. Dr. R said to give him Tylenol as needed and send him to school. Hopefully he will start feeling more like himself soon!
We hope everyone has a nice weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, March 1, 2007 7:30 AM PST
HAPPY 11th BIRTHDAY ALEX!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Alex is a leap year baby and his birthday is February 29th. People always ask us if he celebrates on February 28th or March 1st in non-leap years. My theory is that if it wasn't a leap year he would have been born on March 1st so that's when we celebrate.
Alex asked to go for a birthday breakfast at Uncle Bill's Pancake House. It's a famous restaurant by the beach in Manhattan Beach. Alex, Emily and Steve got up early to go have some yummy pancakes before school. I'm not a morning person so I stayed home to get a little extra sleep.
Alex is having a few friends over tomorrow night for pizza, cake and a video game party. He's saving his money to buy a Nintendo WII and had hoped to have it for the party. Unfortunately they are really hard to find and no one around here has them in stock. I did find out that Target expects to get some in this weekend so I guess we get up early and go stand in line.
Alex missed school on Monday. He woke up Sunday night complaining his ears hurt. I took him to the ENT on Monday and he thinks that Alex has GvHD in his ears. He said it's dry and flaky like his face and scalp. He cleaned some wax and flakes out of Alex's ears and gave us some ear drops. It seems to have helped.
Thanks for checking in on us. Don't forget to leave a message for the birthday boy in the guestbook!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, February 22, 2007 4:15 PM PST
Hi Everyone -
We're enjoying our week off from school. We've been playing a lot of games and our favorite is Monopoly. TV, Video and Computer games seem to be other popular activities. Alex has also been enjoying being able to sleep in.
Alex went to COH on Tuesday. His labs looked pretty good with the exception of his kidney functions which were a little high. His doctor thinks that we should see a nephrologist (kidney doctor) at some point. They don't have one at COH so we'll have to go to UCLA for that speciality. The plan right now is to stop giving the Epogen shots to try to make Alex produce erythropoietin on his own. If you keep giving the shots, his body will eventually stop making it. Also, they don't know the long term effects of continuing to give it since it's not something that is usually used for a long period of time. So, when his hemoglobin drops to a level where he is symptomatic, probably 8.0 - 8.5, we will give him a red blood cell transfusion. The plan is to see how long he can go between transfusions. They probably won't give him more than three or four transfusions. At that point if he isn't producing erythropoietin, we will probably re-start the Epogen shots and talk to a nephrologist about a long term plan. So, lets pray that Alex's body can make erythopoietin on it's own!
We hope everyone is enjoying their week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!
Friday, February 16, 2007 11:20 PM PST
Hi Everyone -
Well, a day after I posted my last update Alex came down with a cold after only being back in school for a week. He missed Monday but made it through the rest of this week with his tissues. Emily and Steve have the cold too. I seem to be the only healthy one around here, but they keep telling me not for long.
Alex is happy that next week is a vacation week. It's the first time our school district has had the week off, but we're pretty happy about it. Alex says that he needs to go on a tropical vacation and that Hawaii sounds nice! I told him that when his skin GvHD is gone that we can discuss it.
Since Alex missed school on Monday we decided to go to COH next week instead of pulling him out of school another day. They were a little concerned about letting us wait, but Alex is stable and I promised to call if anything seemed off.
I've spent a lot of time this week on the next Young at Art project for Emily's class. I went to the training which was fun, but the prep is taking a looooooong time and is pretty tedious. The project is to make "African Wrap Dolls". The idea is to make the dolls from found objects including sticks. Then you wrap them with fabric strips and dress them with more material if you want. It took me hours to cut the strips of fabric. Then it took me hours more to tie the branches together to make arms and legs. Then my co-docent had to take the wire and strip it and unwind it. I know it's cheaper to buy it that way but it would have been a heck of a lot easier to just get a spool of wire! I took all the supplies to school today and told the teacher to guard them with her life. Steve's re-named the project " The Blair Witch Doll Project". So, if you've called me this week and I haven't called you back, I promise to get back to you soon.
We hope everyone has a nice warm weekend. It's supposed to be in the 80's here tomorrow:-) Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Saturday, February 10, 2007 9:19 PM PST
Hi Everyone -
Alex went back to school last Monday and he had a great week. He was so happy to be back at school with his friends. He had a playdate on Friday too. Medically, Alex still has some aches and pains that we can't figure out. He has an appointment at COH on Thursday so we hope to get some answers then.
I always tell Emily that she is my sunshine because she always brightens my day. She's always saying something the makes me laugh. The other day she realized that she wouldn't be the youngest in the family anymore when Aunt Kim has her baby. So she says " oh well, being the youngest was nice while it lasted".
My mom is home and improving each day. We went to see her today and I was really impressed with how well she's getting around. She actually walked down the hall with her cane and not her walker and didn't even realize it! I saw her in her room and I saw the walker at the other end of the hall and wondered how she had gotten from point A to point B. She said that she told the physical therapist that she thought she could walk with a cane and they told her not to try it. I guess subconsciously she really wanted to walk without the walker but she said she'd try to remember to use it until she sees the therapist on Monday.
That's all that's going on in our neck of the woods. We hope our friends and family in the far and frozen east are staying warm. We had temps in the 80's at the beginning of last week. It's cooled off to the 70's. I actually forgot to take a jacket for myself and the kids today. I guess it's a good thing we didn't need them :-)
We hope everyone is enjoying their weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Friday, February 2, 2007 9:51 PM PST
Hi Everyone -
Well, Alex didn't make it back to school last week. He was having a lot of pain in his hands so we decided to try to figure out the problem before sending him back to the germ pit, aka school. We increased his magnesium and that seems to help some. Alex does plan on going to school on Monday.
My mom had her knee replacement re-done on Wednesday and is doing pretty well at this time. I think she's a lot stronger this time around from all the physical therapy she's had in the last year. She will go to rehab at the hospital she's at Saturday or Sunday. Hopefully it will be a short stay there with no complications.
Since most of our family reading this already know that Kim is pregnant, I figure I can let you all know that she is going to have a little girl. I'm going to be an Auntie and I can't wait! I'm off to buy pink yarn :-)
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Saturday, January 27, 2007 8:56 AM PST
Hi Everyone -
Alex had his ear tubes put in Monday morning. When we got to the hospital at 6:00 a.m., they told us that Alex was scheduled for 10:30 not 7:30. I knew that had to be a mistake since Alex's doctor has Monday morning office hours. When the doctor arrived at 7:30 he was pretty mad that Alex wasn't ready to go. Alex did have his port accessed for the procedure but it took awhile to find someone who could do it. While we were waiting the anesthesiologist took the port needle that I brought in and hooked it up to the bag of saline. I told him that wouldn't work since you needed to see if the port would draw and flush before hooking up the fluid. He told me that he had never accessed a port so I cut him some slack. But, it's still scary when a doctor doesn't know what he's doing. The nurse that accessed and de-accessed Alex was great and really knew her stuff. They wheeled Alex off and 20 minutes later the doctor came out to talk to us. He said that there was absolutely no fluid behind Alex's eardrums which is good. Alex had his appointment at COH on Thursday and it went smoothly. We're going to keep him on a strong oral antibiotic for another month to make sure that the mastoiditis doesn't recur.
Alex really wants to go back to school so he's going to try to go for the day on Tuesday. I have reservations about sending him back right now since I don't want him to get sick again. Alex told me that he had to go back sometime and said it really didn't matter if it was now or in three weeks. Is this child really only ten ???
I'm sad to report that our friend Baby Donovan passed away. He bravely battled leukemia since he was five weeks old. He was always so happy and playful in spite of the circumstances. I hope and pray that one day there will be a cure for this stinking disease. www.caringbridge.com/in/babydonovan
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, January 17, 2007 7:41 PM PST
Hi Everyone -
Alex is feeling a lot better. He saw the ENT on Monday and we have tentatively scheduled the tubes to be put in his ears next Monday. We're still trying to get a slot at the hospital so that they can use Alex's port. Monday would be at the out-patient surgery center where they don't know how to access a port. I was willing to get him accessed at COH the day before but the surgery center said that they have to start the line. Alex isn't too happy with the situation since he wants to use his port and doesn't want an IV line started. Unfortunately he remembers them blowing vein after vein before he had a central line.
Alex has been watching the Food Network quite a bit. I had gotten him a few cookbooks for Hanukkah and he really likes Emeril who has a show. He's planned a big feast for Friday when cousin Laurie will be here for dinner. Today we made the red sauce from scratch since everything in Alex's meal needs to be made from scratch. Alex didn't want to squish the tomatoes with his hands like it said to do so I did it. Emeril would be so proud!
Our friend Baby Donovan doesn't have much time left. Please keep him and his family in your thoughts and prayers. www.caringbridge.com/in/babydonovan
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Tuesday, January 9, 2007 6:00 PM PST
Greetings from Manhattan Beach, California where the temperatures were in the 80's today. Alex was sprung this afternoon. Thank you so much to Tamah for coming to get us and taking us home. I didn't have a car since we were up in Lake Arrowhead when Alex got sick and Steve dropped us off at Spa COH.
Alex is feeling pretty good. He's still running for the bathroom, but his cultures are negative. We'll go back to COH on Thursday and will see his doctor. We have an appointment next Monday to see the ENT. I had hoped that they can put the tubes in his ears sometime next week so that he can go back to school the week after that but I just got a call from COH that the doctor wants him to stay out of school for six weeks.
Alex's counts have really taken a beating from this infection. His ANC is only 900. His platelets were down to 70 but came up to 94 which isn't a huge difference. His hemoglobin was 9. something. He will probably get another Epogen shot while we're in the clinic on Thursday. His electrolytes are all off so we'll need to add some supplements. He's not thrilled with the HUGE potassium pills. I figured out that I can dump the contents of the capsule into a spoonful of pudding and get it into him that way.
I'm totally exhausted and looking forward to a peaceful night of sleep in my own bed. Steve is feeling horrible so I hope he doesn't get the rest of us sick. Since it's so warm I told him to pitch a tent in the yard, but he wasn't thrilled with that idea.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, January 8, 2007 12:20 PM PST
Greetings from Spa COH -
The BMT doctor was just in and she says that Alex does NOT have pneumonia. That's the good news. The bad news is that she wants to check for C-diff so she won't let us go home. Alex has never had C-diff but it's basically bad bacteria in your intestines caused by antibiotics. Of course it's treated with more antibiotics. She said she has to culture it for three days to get an accurate reading. I'm hoping that she changes her mind and lets us out of jail sooner rather than later. Steve has a cold so I'm stuck here. I now have dark circles under my eyes.
Alex is feeling pretty good except for having diarrhea. He's been dragging his tired mom all over the place. I'm glad he has so much energy! We're going to go snuggle in his bed while we watch a movie. We've watched a ton of movies. I think I've watched more TV in the last week than I've watched in the last year.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!
Jill and Alex
Saturday, January 6, 2007 6:59 PM PST
SUNDAY - Alex has pneumonia. More later...
Hi Everyone -
Alex had a good night but I can't say the same. His pumps were beeping all night and he sleeps right through it but I have to get up to call the nurse. The nurse last night was really loud and every time she came in I thought a herd of elephants had arrived.
Our day nurse yesterday and today is a nurse that we know and like who used to be at CHLA. She was looking at my sock that I'm knitting and I asked her if the needles I'm using look like a PICC line. She said that they did but she thought I was sick. She couldn't believe that was the first thing that came to my mind. She thinks I've been in the cancer world too long! I hope my cancer friends get a kick out of this. I know the rest of you won't have a clue what I'm talking about which is probably a good thing!
I asked the doctor today why we couldn't go home tomorrow since it would be a week on IV antibiotics. She's a hem/onc, not BMT so she had to ask the BMT doctor who just happened to be here. We haven't met her yet. Apparently Dr. Rosenthal left explicit instructions that Alex was not to be released until Monday. Bummer!!! Alex's last blood pressure was high but not high enough to warrant meds. They'll keep an eye on it.
Alex and I went for a stroll outside today. The weather was great, no jackets required. To our friends and family in the frozen wastelands, we hope you're not too jealous :-) The Japanese garden and Koi pond are closed on the weekend so we were a bit bummed. We did find the wall with all the plaques on it, but we didn't see the one we were looking for. Upon our return from our walk we received new info that we need to look in the old administrative building. So, after a rest we set off in that direction but still didn't find what we're looking for. Now we're told to check out a park like area to the back of the hospital building. That will be tomorrow's adventure. I feel like I'm playing a game of Clue!
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!
Jill and Alex
Friday, January 5, 2007 9:59 PM PST
Greetings from Spa COH -
Alex had a good day. I got here around 10:30 and he was happy to see me. Zakkai and Tamah got here around 11:30. The boys had fun playing video games and building legos. Tamah and I sat outside the room and knit. We had a great view of the mountains. Randi from Chai Lifeline brought us a feast for dinner. Alex was so excited to have something other than hospital food. He still doesn't have a huge appetite but he had a bite of everything. Thank you Randi!
The BMT doctor came in before I got here but I saw the infectious disease doctor today. He said the plan is to give the IV antibiotic thru Monday and to have Alex go home on oral antibiotics for one week. I'm a little leery of only giving him antibiotics for an additional week since whatever he has is very hard to clear. As soon as he's off the oral antibiotics he can have the tubes put in his ears and the fluid drained from behind his eardrums. Our ENT returns on the 11th so we'll speak with him next week. They'll do a repeat CT scan in four weeks. I did ask the infectious disease doctor how Alex could go from no ear pain to a ruptured eardrum and mastoiditis. He said that his ears were probably draining into his mastoids so he didn't have any pain and his ears never looked like they had an infection.
Alex's IGG level came back at 1,600 which is well above the 400 number they were hoping for. So, they're going to discontinue giving him IVIG. That means that after we get out of here he will be off of all IV meds!!! Alex's counts are still low. His platelets were down to 70 today. He's still on IV fluids to help with his chemistries but he's able to get unhooked during the day between antibiotic doses so he can cruise the halls. Today we went to the playroom for music therapy. He really liked playing with some bells they had. The bells correspond to notes on a piano and they had some music that told you which bells to hit. After that he took me on a hike in search of "the plaque". Today's sleuthing found out where it might be but I pooped out and he wanted to go back to his room to order a milkshake so we're going to go look tomorrow.
Emily is doing well at my mom's but she keeps asking where we are. We keep telling her that we're at the hospital but she doesn't get why we're still here. She's gone with us for day visits so she thinks you should get to go home each night and go back the next day.
Well, I hope this update makes sense and isn't too disjointed. I'm going to have to try to get Alex to turn off the TV soon since I want to go to sleep! Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!
Jill and Alex
Thursday, January 4, 2007 5:59 PM PST
Alex has been feeling much better today. They've switched most of his meds back to oral from IV. He's eaten a little and doesn't feel as nauseated. The excitement last night was when Alex's blood pressure got really high. They gave him some meds to bring it down. The last time I spoke with Steve they were going to wait and see how he was doing before giving more meds. We finally got the sinus culture back from last Thursday and it showed that Alex has strep/pneumonia bacteria in his sinuses. Apparently it's a common bacteria to have but it can be hard to get rid of since it's resistant to a lot of antibiotics. The infectious disease doctor was consulted so that they could decide which antibiotics Alex needs to be on to clear his sinuses, ears and mastoids. Steve said the Albuteral seemed to be helping with Alex's cough.
Alex went for a walk this afternoon in search of the plaque with the original founders of COH on it. Apparently my great grandparents ( his great-great grandparents) were co-founders of City of Hope. My mom found this out from her aunt the other day. Her 88 year old aunt says that the plaque is still there. Alex and Steve couldn't find it, but COH is a huge facility. I guess we'll just have to take more exploratory walks :-)
My eye seems a lot better today so I'm going to go back in the morning so Steve can go into work. I feel much better after a good night of sleep too! Alex is glad I'll be back and he also can't wait for his friend Zakkai to visit tomorrow.
Thanks for checking in on us and for signing the guestbook. It helps to know that people are thinking of and praying for us.
Jill
Wednesday, January 3, 2007 3:13 PM PST
Greetings from Spa COH -
Alex felt pretty bad yesterday for most of the day but perked up in the evening. He ate a little of his dinner and went for a walk around the unit. He even stopped in the playroom to send an e-mail. He was a little dizzy but since he had the IV pole to hold onto he did ok. They switched a lot of his meds to IV since he's been so nauseated that he hasn't been able to take them orally. There are a few pills that he has to take by mouth since he would need more than one line to give them IV. Alex has been wheezing so they gave him Albuteral which seemed to help. His cough sounds horrible so he got some cough medicine at 4:00 a.m. Of course he was bright eyed and bushy tailed at this lovely hour.
His counts have all dropped from the infection. His ANC is down to 1.2 which is the lowest I've seen it in a long time. His hemoglobin has dropped to 9.8 which is no surprise. He will need to re-start the Epogen shots today. He asked the nurse if I could give it to him. I really hate giving shots, but he really, really wants nurse mom to do it. His platelets have dropped to 92 and some of his chemestries are off. They'll add magnesium and phosphorous to the IV.
To complicate matters, I woke up with pink eye. My eye looked red yesterday but I thought it was from lack of sleep. I just saw the doctor and she confirmed that I have pink eye and said I need to go home until it's better since it's highly contagious. So, Steve is on his way over here and Alex is not happy about it. He wants Mommy.
Emily spent the day at Tamah's on Monday. Yesterday she went to an Adventure Day Camp that I had signed her up for because we were supposed to be in clinic and I didn't want to take her. Steve drove her out to my mom's last night and today Linda and Brooke are going to take her out for awhile. Tomorrow she's going to play with her friend Olivia who is staying with her Nana near my mom's. I'm glad that Emily is such a happy kid and thinks this is all a great big adventure.
My mom was supposed to have her knee replacement re-done today but last week they decided to postpone it. I guess all things happen for a reason! My mom is still hobbling around but she has help so she's able to have Emily. Emily said that she's going to take care of Nana.
Yesterday Tamah came to visit and we knit for a bit while Alex snoozed. She's going to bring Zakkai over on Friday to visit with Alex. Thanks Tamah!
Thanks for checking in on us and please sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill and Alex
Monday, January 1, 2007 8:08 PM PST
Hi Everyone -
I had an update all typed up and ready to post but I never got to it because Alex spiked a fever and we are now inpatient at City of Hope. We went up to Lake Arrowhead on Friday and Alex was doing o.k. On Saturday he started complaining that his ear hurt and he was nauseous. At 12:30 a.m.. he started vomiting. At that point he didn't have a fever so we put him back to bed and hoped he would feel better in the morning. He was still sleeping at noon when I went in to take his temperature and it was 102. I called COH and of course they said to bring him in. So we quickly packed up and headed down the mountain. The doctor in urgent care at COH (No emergency rooms!) was awesome. He immediately ordered a CT scan and the radiologist was standing by to tell the tech exactly how he wanted the cuts. They wanted to rule out mastoiditis. If it was not mastoiditis they would give us antibiotics and send us on our way. If it was mastoiditis they needed to admit us. The CT scan did show that he has mastoiditis on both sides. It's a pretty serious infection that requires about two weeks minimum of IV antibiotics. The doctor today said that we should expect to be here at least a week and then hopefully we can go home and do the IV there. It's not like we haven't run pumps and IV's before.
Alex still feels pretty crappy. He's slept all day and when he wake's up for a minute or two he feels nauseous. He's actually now awake at 7:30 p.m. so I hope he sleeps tonight. It's really easy to mess up your days and nights while in the hospital. Steve and I certainly didn't see this coming. Alex hasn't been inpatient since his transplant except for one night a few years ago and that wasn't for anything major. Alex had the same exact symptoms three weeks ago and he saw two doctors who both totally missed what was really going on. I'm glad we're where we need to be to get Alex better but I just wish he didn't feel so miserable.
I am severely sleep deprived after two nights of very little sleep so I hope this update makes sense!
We wish everyone a happy and HEALTHY 2007! Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, December 14, 2006 6:29 PM PST
Hi Everyone -
Alex's ears are feeling a little better but he's still complaining that he can't hear very well. They say that this hearing loss should be reversible and I hope they're right. We still don't know what to do about his sinuses. We have an appointment at the end of next week with the ENT. We went to City of Hope today. Alex's uric acid level was high so they're going to put him on Alipurinol. They're concerned that if we don't do anything Alex could get Kidney Stones or Gout. We were supposed to do a kidney function test but due to insurance issues it never got done. Dr. Rosenthal wants to do a different test that he says is a better measure of how the kidney's are functioning. It's called a GFR and is a nuclear medicine test. We have that scheduled for January 2nd when we go back for Alex's next appointment.
Alex's stomach is better. I wonder if he actually had a stomach bug since I had one last weekend. At any rate, we're both feeling better but now Emily is sick. She has a cold and didn't want to go to school today so we took her with us since Steve has been out of town this week. Taking a sick child into a setting with immune comprised individuals is not my idea of a fun time. We were pretty good about washing her hands after she blew her nose so I hope she doesn't infect some unsuspecting individual.
Tomorrow is the first night of Chanukah and the kids are really excited. Grandma is coming down to visit and Uncle Richard and Aunt Kim are coming up. We're going to my mom's this weekend as well and Uncle Steve and Aunt Janet will be there. Uncle Mike will visit us the following weekend. We're all looking forward to some wild and crazy days ahead, but a good kind of crazy :-)
To all who celebrate the Festival of Lights, we wish you a very Happy Chanukah! Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!! Sorry about the new security but we got some VERY disgusting spam in the guestbook and this should help stop it from occurring again.
Jill, Steve, Alex and Emily
Wednesday, December 6, 2006 10:27 PM PST
Hi Everyone -
I thought last week was crazy, but this week hasn't been any better. Alex was complaining of nausea all day Sunday. He woke us up at 3:00 a.m. because he didn't feel well. He had a hard time going back to sleep. He felt a little better Monday but was up again at 3:00 a.m., this time with terrible ear pain. Steve gave him Tylenol which didn't do anything. At 6:00 a.m. I gave him a Benadryl in hopes that he could get a little sleep, but it didn't work. At 11:00 a.m., out of desperation I gave him some Motrin. He's not supposed to have it, but like I said, I was desperate. That seemed to help a little. I got him into see the ENT but I had to run and get his CT scans first since they were at a different office. It turns out that his right eardrum ruptured and he has an infection in both ears. She gave us drops for his ears and we re-started him on Levoquin. The CT shows that his sinuses are totally packed. She's not sure if the antibiotic will clear it so he may need surgery. We have an appointment in two weeks to see how he's doing. We think the nausea is from everything dripping into his stomach. He hasn't been eating a lot and if he does eat it's anybody's guess if it's going to stay down. Then to make matters more interesting he spiked a 38.8 fever Tuesday night. We're supposed to call and go in if it's over 38.5, but it was 11:30 at night and I knew we were going to CHLA in the morning for our last visit. So, I gave Alex Tylenol and we tried to get a little sleep. He woke up in the morning and vomited for a great start to the day. Then he vomited when we got to CHLA. His fever was 38.2 so they drew cultures off his line and gave him a dose of Cefepine which is an IV antibiotic. We also decided to switch from Levoquin to Zithromax since we had tried Levoquin twice in the last two months and it didn't work. So now it's Wednesday night and he's still nauseous, he still has a fever, his ears still hurt and he just feels plain crappy. I'm hoping for a better day tomorrow!
Baby Donovan is still fighting... www.caringbridge.com/in/babydonovan Please keep him in your thoughts and prayers.
We hope everyone is having a RELAXING week! Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, November 30, 2006 7:50 PM PST
Hi Everyone -
We've had a really crazy week. We went to UCLA on Tuesday. We waited 2 1/2 hours before we even saw anyone and then we didn't get to see the BMT doctor since he was doing procedures so we saw a hem/onc doctor. We didn't really like their program but tried to keep an open mind until we visited City of Hope on Wednesday. City of Hope was great and it reminds us a lot of Duke. We loved the BMT physician and Alex thought it was cool that his new doctor was a counselor at Camp Simcha when it was in Israel. Alex said he liked him because he was a really serious doctor. I told him that if he was a counselor at Camp Simcha even if it was a long time ago that he must have once been wild and crazy. Being wild and crazy is a prerequisite for being a counselor at Camp Simcha. As much as I dread change, I think this will be a good move for us. We will see the same doctor week after week. My main gripe at CHLA was the rotating doctors and I never felt they all knew what was going on with Alex from month to month since we rarely saw the same doctor two months in a row. We'll continue to see our Endocrinologist at CHLA so Alex can still go back and visit all his favorite nurses. Today Alex had a CT scan of his sinuses. We go back to see the ENT next Thursday so we'll find out more then. Alex has his Day Hospital appointment next Wednesday at CHLA which will be his last appointment there. We'll start going to COH in January.
I was saddened to learn that our friend Baby Donovan had relapsed again after his 2nd transplant. They're going to try a few things and his family isn't giving up hope. I know they could use your prayers and encouragement at this difficult time. www.caringbridge.com/in/babydonovan
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Tuesday, November 21, 2006 10:37 PM PST
Hi Everyone -
Alex says thanks for all the re-birthday wishes. We ended up having dinner at one of our favorite Italian restaurants. We went early to beat the crowds since we still don't take Alex out in large crowds due to his suppressed immune system. I forgot to mention this in my last update since it's just a part of our lives now. We plan all our activities around when places are the least crowded and some places we just avoid all together. I always carry a mask in my purse for situations where I feel Alex needs it. If I hear people coughing I start to hyperventilate and smack the mask on the poor kid!
Alex saw the ENT last week and she says she thinks his sinuses never totally cleared after the sinus infection he had over the summer. She put him on two different nasal sprays and she wants him to get a CT scan in two weeks. She also did a culture to see what bacteria is hiding out in his nose.
Alex went for Physical Therapy today. Since he hasn't been feeling great for the last few months we haven't gone but Alex's therapist was really pleased with his progress and said that he's doing great. He does get Adaptive P.E. at school twice a week and he's been running around more with his friends so we're actually seeing some calf muscles :-)
Next week we're going to check out UCLA and City of Hope since we have to leave CHLA at the end of the year. We did get continuity of care for the physician group at CHLA, but now the hospital is dropping Blue Shield as well. It 's too costly to stay even with continuity of care since our co-pay is a lot higher for out of network. We decided not to check out CHOC at this time.
We had wanted to go to Northern California for Thanksgiving this year and to our cousin Julie's Bat Mitzvah, but we decided with flu season upon us that we couldn't risk traveling and being in crowds now. We'll miss seeing all the family but we know we're doing what's best for Alex. Since my mom's home from the hospital we're going to have Thanksgiving there. It looks like they will re-do the knee replacement sometime at the end of this year or beginning of next year. She can't bend her leg and is getting around with a walker. She can't stand for long or go very far, but at least she's home and can sleep in her own bed.
We wish everyone a wonderful THANKSGIVING. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Sunday, November 12, 2006 3:12 PM PST
HAPPY 4th RE-BIRTHDAY ALEX!!!
Four years ago today Alex was given a second chance at life thanks to a mom who donated her son's cord blood. Whoever you are, THANK YOU !
We're so happy that Alex has gotten to this point in his journey but the battle isn't over. Yes, he is in remission thank God, but he is and will continue to suffer from late effects from all the chemo and radiation he had to rid his body of the nasty cancer cells. People look at Alex and tell me how wonderful he's looking and think we're done and everything is back to normal. They have no idea how far from the truth that is. Alex takes prednisone (a steroid), voriconazole (anti-fungal), acyclovir (anti-viral), keflex (antibiotic), imuran (immune suppressant), tacrolimous (immune suppressant), pepcid (anti-heartburn) , magnesium (the tacrolimous makes his body leach it), calcium (the prednisone makes his body leach it), Pentamaine (to prevent neumosistis pnemonia), IVIG (antibiodies to fight infections), daily Growth Hormone Shots (he produces no growth hormone) and weekly Epogen Shots (to make red blood cells). Before he gets his IVIG they give him benadryl , tylenol and zofran so he doesn't have a reaction or get nauseated. All in all, he takes 20 pills a day. He has chronic sinusitus and memory problems from the cranial radiation. He has a dry scalp and red flaky skin from Graft vs Host Disease. His kidney's don't function at full capacity due to the beating they took from chemotherapy and the immune suppressants he's still on. He still has a central line (port-a-cath) to receive his IV meds and have labs drawn. He has adaptive PE and goes for Physical Therapy. He's poked and prodded and given his IV meds and breathing treatment once a month. He has yearly tests to check his lung function and heart function since they can be damaged years later from the chemotherapy. Considering all he's been through and continues to go through it's amazing that he's a pretty happy kid. If you're interested in reading about all the possible late effects from transplant, check out the following link:
http://www.survivorshipguidelines.org
This week we had a scare. Alex was convinced that something was wrong with his port and that they were going to need to do surgery to replace it. We headed into CHLA and they determined that since he's grown a bit that the skin has moved, not the port as Alex had thought. It worked fine and he got his IVIG while we were there. He's still having a hard time with his sinuses so we re-started him on his albuterol inhaler three times a day. He has an appointment with an ENT on Thursday and I'm hoping she can help.
Thanks for checking in on us and continuing to be a part of our journey. We really appreciate everyone who has stuck by us and supported us on this roller coaster ride. Don't forget to sign the guestbook since we like to know who's out there keeping tabs on us :-)
Jill, Steve, Alex and Emily
Sunday, October 29, 2006 6:28 PM PST
Hi Everyone -
Things are still crazy here. Since Alex is still coughing a lot we started him on an Albuteral inhaler. He's not thrilled with it and almost threw up his meds a few nights ago so now we do the inhaler before the meds! I think it's helped a little, but Alex still feels pretty crappy and came home from school early on Monday. I really hate that he can't shake a cold in a week like a normal person and that it takes him months to get over it.
On the insurance front, CHLA has managed to get Blue Shield to agree to continuity of care for the physician's group for the next six months. The only problem is that the hospital will not be covered as of next year and Alex's Day Hospital visits are considered hospital visits not office visits. It looks like UCLA and Blue Shield came to an agreement so we're going to go talk to them hopefully this week or next week.
Emily's "bumps" have fallen off. I still can't tell if there are any new "bumps". She's excited about Halloween and is going to be a rock star. Alex refuses to dress up this year. He's never really been into it so I'm not going to force him. He likes to hand the candy out at the door so that will be his job. We will play our spooky music again this year. The kids made Mr. and Mrs. Potato Head pumpkins. They're really cute.
My mom is in the hospital again and it looks like it's going to be another long haul. Her prothesis in her knee is infected and that they are going to need to re-do the knee replacement. Steve was out of town for the week AGAIN but he came home Thursday afternoon because they were taking the hardware out of my mom's knee. I got the kids to school and raced out to the hospital. My mom will be on IV antibiotics until they re-do the knee replacement in about eight weeks. In the mean time they put a cement like substance in her knee to hold it together. She still can't get out of bed and is pretty frustrated with the whole situation.
We hope everyone has a fun and safe holiday. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, October 16, 2006 9:31 PM PDT
Hi Everyone -
A lot has been going on here. Last Tuesday I got a note that someone in Alex's class had hand, foot and mouth disease. Not a good thing for an immuno-suppressed person to catch, but so far so good. Then on Wednesday Emily was diagnosed with Molluscum Contagiosum. It's a skin disease that I'd never heard of. It's on her face and looks like pimples or warts. Apparently it's pretty contagious and also really bad for the immuno-suppressed. So by this point I was freaking out and Steve was out of town for the week. To top it off, I got a cold on Thursday and Alex still sounds horrible. Steve came home Friday but I think he wanted to turn around and run the other direction!
Today Alex had his day hospital appointment. Since I still have a fever Steve took him. His hemoglobin is up to 11.7 thanks to the Epogen. He has five more weekly shots and then we watch and wait. His other counts are holding steady. I had forgotten to mention that last month they had increased his Imuran since his skin was flaring. Imuran can really hammer the counts so we were happy to see that it hasn't. Alex still has some GvH "hot spots", but overall looks pretty good. Alex's lungs sound clear and they don't think he has a sinus infection. Alex had to have a new brand of IVIG today since they stopped making his old brand. He got nauseated part way through the infusion since they didn't give him Zofran first. Steve thought he should have it but didn't push. For some reason it's never written in the orders and I have to argue with the nurse every time to get it. I won't let them hook Alex up to the IV until the Zofran is in him so that usually gets them off and running. Alex felt better once the Zofran was on board.
Emily can go to school as long as the "bumps" as she calls them are covered. We have a huge piece of gauze taped on her face that she's not too thrilled about. They froze the bumps off, but a new crop can still pop up and have to be frozen off. The doctor said it would probably take a few months to get rid of all of them. Emily hardly ever gets a cold (knock on wood) but she always seems to get strange ailments that no one's ever heard of. I think I'd rather deal with the common cold!
We hope everyone's week is off to a good start. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Tuesday, October 10, 2006 9:43 PM PDT
Hi Everyone -
Well we got the Epogen so we didn't need to take our joyride to CHLA. Right after we got that problem solved we found out that Alex's growth hormone wouldn't ship because the insurance wanted a new approval. We went round and round and round and it's finally going to be shipped out today. Thankfully we had a little extra on hand since we're getting it two weeks late.
Alex has been battling a cough/cold for the last few weeks. We switched him to a really strong antibiotic and he seemed to improve for a few days but then he started to feel worse. It's so frustrating for him and us when he gets sick since it takes so long for him to shake it.
The homework problem seems to be solved for the moment. Alex's teacher is also modifying some of his tests so that he can do a matching or multiple choice type of test since he has a hard time with memorization and information retrieval.
We spent the weekend in Lake Arrowhead. It was really nice up in the mountains where they actually have seasons. It felt like Fall :-) Most people think I'm nuts but I get tired of our perfect 70 degree weather all the time. Alex found a kids cookbook by Klutz at the toy store. He's really into cooking right now which is no surprise given how much my "steroid boy" loves food. If anyone has any recommendations for good kids cookbooks let me know.
We hope everyone is having a good week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill, Steve, Alex and Emily
Thursday, September 21, 2006 7:10 PM PDT
Hi Everyone -
Well, Alex's hemoglobin was down to 9.6 so we've re-stared the dreaded Epogen shots. The only problem at the moment is that the company that ships us the medicine said that our insurance had not approved it. Our wonderful BMT nurse at CHLA said it had been approved so hopefully we will get it by Monday. If not we get to take a joyride to CHLA for the shot. This has happened before so it's not a total surprise, just a total pain!
Alex has been a bit frustrated with the amount of homework this week but I spoke to his teacher today and we're going to figure out a way to only have him work for an hour or less a night. Last night he spent one hour just on Math. He can do the work but he just does it ever so slowly. In other school news, he's excited that Dr. Katie is coming to talk to the 4th grade tomorrow about what he's been through.
I've decided to be a co-docent for the Young at Art program at school. I'll be teaching six art lessons in Emily's class this year. Emily is thrilled to have me there. When I went yesterday for a mini lesson all her friends raced up to me and asked when they could have playdates with her. It was really cute. She has a lot of homework this year but plows through it pretty quickly so she hasn't complained about it.
This weekend is the Jewish New Year. Grandma is coming to visit and we're going to Nana's (my mom's) for a gourmet dinner. The kids have decided that she's a gourmet chef :-) To all our family and friends L'Shanah Tovah.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, September 14, 2006 8:33 PM PDT
Hi Everyone -
Alex has a Day Hospital appointment on Monday. I'm concerned that his hemoglobin is pretty low right now. I had to pick him up early from school one day this week because he wasn't feeling well. He of course says that his hemoglobin is fine because he doesn't want to start getting Epogen shots again. I'd be pretty surprised if he doesn't need them at this point. Guess we'll have to wait for Monday's labs.
We had Back to School night last night. Emily had written a story called "All about me". I learned that she is going to be a fashion model when she grows up. Emily has Alex's second grade teacher so I already know what to expect but I enjoyed learning about the 4th grade program and Alex's teacher's philosophy on teaching.
Funny story... I let Steve pick out some glasses frames himself. BIG mistake. He comes home and Alex starts laughing hysterically and then he tells me that I can't be seen with Steve but if I am I should say he's my uncle. I just love Alex's sense of humor! Even "Uncle Steve" got a good laugh out of it.
On that note I'll close for now. I'll update later next week after our hospital visit. I hope everyone has a great weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Sunday, September 3, 2006 8:43 PM PDT
Hi Everyone -
The kids had a fun first week at school. They really like their teachers and classmates. Check out the first day of school picture. It's the third one :-)
Our insurance woes continue. We just found out that as of the end of the year CHLA will no longer take our insurance. We can go to City of Hope or Children's Hospital of Orange County. Not knowing anything about either place I've been asking some people I know who go to those places for the inside scoop. We will probably go check out both places in the next few months. Alex is pretty bummed. He's been at CHLA since diagnosis except for our time at Duke. He's not big on change, so it's going to be an interesting transition. I can't say that I'm looking forward to learning a whole new hospital system. Plus, the drive to either place will be a lot farther. I had hoped to be able to go to UCLA but they don't take our insurance either.
We've been busy this weekend. We had Aunt Marilyn and cousins Andrew and Dan over for a BBQ yesterday. It was great to see them. Today Tamah and I went to the Hermosa Beach Fiesta. I managed to get a little too much sun even with sunscreen. It was a beautiful day to walk around and see all the arts and crafts and clothing. Tonight Zakkai is sleeping over here. Alex is thrilled. Tomorrow we're BBQing with my Mom and Aunt and Uncle from Colorado. In between all the fun stuff we did manage to get some things cleaned up/organized around the house. So, it's been a fun as well as productive long weekend.
Please continue to keep Baby Donovan in your prayers as he prepares for his second transplant... www.caringbridge.com/in/babydonovan
We hope everyone is having a fun and safe weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Friday, August 25, 2006 5:45 PM PDT
Hi Everyone -
Alex is home!!! He had a good time at camp and came home with lots of items he made in glass fusion, wood shop, leather shop, and arts and crafts. A huge thank you to Chai Lifeline for having a wonderful camp, medical staff and counselors. Also huge thanks to Michael, his counselor for putting up with him for two weeks and to Duvi who went to visit both weekends. I realized when I was packing Alex for camp that there is nowhere else we could possibly send him. I had a backpack full of his meds and creams. Caring for these cancer kids is a huge responsibility and Camp Simcha does a wonderful job making sure the kids forget about their illness and have fun!
This week marked five years since Alex was diagnosed. In some ways the time has flown by and in others it has crawled. We've certainly had our ups and downs. The roller coaster ride continues and we still take one day at a time. We're thankful that Alex is doing as well as he is but we'd sure like to get rid of some of the 25 pills he takes a day. There was just a discussion on one of the lists I read about when you can be considered a survivor. It's 5 years "event free". Since Alex had an "event" being relapse, I'm not sure when he's officially considered a cancer survivor. But, in my book, he's been a SURVIVOR since the day he was diagnosed!!!
Alex had his Day Hospital appointment for IVIG and Pentamadine this week as well as having Physical Therapy and having his orthodics re-casted. We've been busy! His hemoglobin has dropped a bit and they wanted to re-start the Epogen shots. Alex convinced me to find the doctor and talk her out of it. He was still hooked up to an IV pole and didn't feel like roaming the halls. We did decide to wait another month and decide what to do then. His kidney functions are creeping back up again and I don't know if it's due to the increase in one of his immune suppressants or from lack of fluids while at camp. I guess we wait to see next months numbers. We did decrease his steroids a tiny bit this week so we'll have to see how he does with that as well.
School starts on Wednesday. I think both kids are looking forward to it. We're going to go over to the school later to see who their teachers and classmates are going to be. They posted them earlier today but I didn't want to fight the crowds.
Please say some prayers for our friend Baby Donovan who has just relapsed. He's getting chemo to reduce the leukemia in his little body so he can have a second transplant. www.caringbridge.com/in/babydonovan
We hope everyone enjoys the last days of summer. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Sunday, August 20, 2006 4:53 PM PDT
CHECK OUT THE SUMMER PICTURES
Hi Everyone -
Emily had a blast at Camp JCA Shalom. When I asked her how long she was going to go for next year she told me that she was still only going for 5 nights since she wanted to spend the rest of the summer with Mommy and Daddy. How cute is that??? Last week Emily went to a day camp and had a great time. She's currently at Camp Nana but we will pick her up later today. She has a few playdates next week and is going to beach camp a few days.
Alex is having a good time at Camp Simcha. He can't wait to come home on Tuesday and I'm ready for him to be home too. Two weeks is a long time for us to be apart. Alex has a Day Hospital visit on Wednesday and on Thursday we have to have his orthodics re-casted and see his physical therapist.
I've been enjoying the last week by going to lunch with friends and shopping of course :-) We've had a really fun summer and I can't believe that school starts in ten days.
I hope everyone else is enjoying the last days of summer. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!
Jill, Steve, Alex and Emily
p.s. - It looks like our friend Baby Donovan has relapsed again. Please leave his parents a note of encouragement if you can www.caringbridge.com/in/babydonovan
Thursday, August 10, 2006 3:48 PM PDT
Hi Everyone - (CHECK OUT THE NEW PICTURES)
The kids both got off to their respective camps. I'm not quite sure what to do with myself since I have so much free time!
Alex is a bit homesick but he's really looking forward to seeing the camp computer genius of years past this weekend. Duvi, Alex really misses you. Hope you have fun and take his mind off of home :-)
It was really funny when Alex and I dropped Emily off at camp. We were walking out and Alex told me he could never adjust to that type of camp. I couldn't stop laughing since we've been joking all week that his camp is like going to "The Spa". Emily's camp is in a pretty rustic environment but it's what camp should be. One of Emily's counselor's is from our synagogue. Emily was happy to see a familiar face.
Alex's address once again is :
Alex Schwab
C/O Camp Simcha
430 White Road
Glen Spey, NY 12737
He will be in New York until August 22nd.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill
Saturday, July 29, 2006 11:20 PM PDT
Friday August 4th - Mini update
HAPPY 40th BIRTHDAY to the best husband and father!!! When Steve came out of the bedroom this morning we were all waiting to sing Happy Birthday to him. Alex and I went to get a cake today since it's too hot to bake. We're also planning on taking Steve out to dinner.
Check out www.caringbridge.com/mi/isaiah to see some pictures of Alex visiting with his transplant buddy Isaiah. I have some other summer photos that Steve needs to post on Alex's site too so check back soon.
Emily has some exciting news to share. She is going to sleep away camp too. She's going to Camp JCA Shalom here in Malibu for five nights. She can't wait to go. She has been begging to go to sleep away camp since Alex started going a few years ago. It's for five nights and it's only an hour from home. I'm sure she will have a super fun time.
Hi Everyone -
I'm back!!! We've been very busy so far this summer. A few days after we returned from Arrowhead we all got Emily's cold. A few days after that we left for a three week vacation/Duke check -up with varying degrees of sniffles. Our first stop was Maryland to visit with the Schwab side of the family. We had a wonderful time visiting with everyone. Susan, Dan, Jesse and Jacob - Thank you for having us for a week. We loved every minute! Melissa, Robert, Rebecca, David and Eli - Thanks for having us for dinner and for letting us borrow David and Eli. Alex and Emily had a lot of fun with them. Neil - Thank you for driving down to see us and for dinner. Our second stop was Duke. Howard and Sandy - Thank you so much for meeting us at the airport and taking Emily. I hope you had as much fun with her as she had with you :-) Thanks for letting us hang out with you for the rest of the week. From North Carolina Alex and I went on to Michigan to visit with Alex's transplant buddy Isaiah and his family. Steve and Emily went home and Emily went to a really fun Day Camp for a week. Pat, Sal, Isaiah and Mishael - Thank you so much for having us. We had a really nice time. It was great being able to catch up in person.
I was home for three nights and then Steve and I went to Newport Beach for a few nights without the kids!!! Thanks grandma for watching them. We had tickets to the Pageant of the Masters Art Show that we go to every year. We got them in October of last year for July way before we planned our three week excursion.
On the medical front, Alex had a Day Hospital appointment at CHLA yesterday for IVIG and Pentamadine. Alex's hemoglobin continues to drop some. It was 10.5 but we're going to wait until Alex gets back from camp to re-start the Epogen. All of Alex's testing at Duke went well but we had really long days. Alex's Echo and Pulmonary Function tests looked great. Alex's CT scan of his sinuses showed some thickening which causes him to get a sinus infection when he gets a cold since the mucus can't drain. We'll start him on a stronger antibiotic when he gets a cold in place of the antibiotic he normally takes for prophylaxis. The hope is that as he gets older his nasal cavities will get bigger and will be able to drain properly. We don't have any of the immune functions back yet.
Alex leaves for Camp Simcha in two weeks and is very excited. We had reservations about letting him go after last year but he insists he will be fine and will get his creams on so his skin GvHD doesn't flare. Last year Alex got the most mail of all the campers. If you'd like to send him a postcard you can mail it to:
Alex Schwab
c/o Camp Simcha
430 White Road
Glen Spey, NY 12737
We hope everyone is having a wonderful summer. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, June 29, 2006 2:18 PM PDT
Hi Everyone -
Alex had his Day Hospital visit last Friday for Pentamadine and IVIG. His labs looked good and his hemoglobin is holding at 12.1 When we were done in the Day Hospital we grabbed some lunch and headed over to the endocrinology clinic. Alex wants to use the Cool-Click device for getting his Growth Hormone. I have been giving him a shot every night but this nifty device gives the medicine with air pressure. Hopefully it will hurt less than the shots. The other good thing about the device is that Alex can use it himself.
We went to Lake Arrowhead last weekend with our friends Linda, Carl and Brooke. A good time was had by all. We went to a Wine and Art Show. We took a speed boat across the lake to get there and Emily just loved it. She had the hugest grin on her face. When we went out to dinner our last night up there Steve split a cookie to give to the kids. Emily gobbled hers up saying "Yummy." Ten minutes later Alex was still analyzing his to determine if he should try it. I just laughed since this incident really shows how different my kids are. Emily jumps right into things and Alex has to analyze the situation first.
Emily came home with a cold. We hope it's short lived and that nobody else gets it. I hate summer colds!
We hope everyone is having a great week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
P.S. - Our friend Isabella is doing great after her Kidney Transplant and might get to go home today :-)
Tuesday, June 20, 2006 10:13 PM PDT
Hi Everyone -
Wednesday is the last day of school. The kids are so excited. Both of their classes are having parties. Alex's class is having a Pizza Party and Emily's is having a Fiesta.
PBS is airing a documentary called "A Lion in the House" about childhood cancer this Wednesday and Thursday. I know it's on at 9 p.m. in the Los Angeles area. To check when it's on in your area click on the following link. http://www.pbs.org/independentlens/lioninthehouse/index.htm It's gotten really good reviews so if you can't watch it, tape it!
We had a really good time at Celebrate Life Days. We were able to spend some time with Isabella and her family. Isabella will be admitted to the hospital on Wednesday for her Kidney transplant. Her dad Steve will be her donor. Isabella had a cord blood transplant about 6 months before Alex and her kidney's were damaged from the pre-transplant conditioning. Please say a few extra prayers for this family and leave some words of encouragement www.caringbridge.org/page/isabellaledesma
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Friday, June 9, 2006 1:03 PM PDT
Hi Everyone -
Alex had two teeth pulled on Monday. He was supposed to have three teeth pulled but he apparently he lost a tooth and didn't know it! He decided against the nitrous oxide and just had novocaine to numb the area. The oral surgeon was amazed that he sat there like a champ and let him poke him multiple times. Alex told him it wasn't that bad. I guess when you've been through what Alex has been through that a little novocaine isn't a big deal. Alex is now sporting a nice toothless grin. One of his permanent teeth is already in and can now move forward into place.
Alex had his labs drawn at home on Wednesday. His hemoglobin went up to 12.4 on it's own. We're cautiously optimistic that his kidney's are healing and this trend will continue. We don't always believe outside labs (labs not processed at CHLA or Duke). Our next Day Hospital appointment is on the 23rd.
We're going to CHLA's Celebrate Life Days this weekend at Paramount Studios Streets of New York. They usually do it at Griffith Park, but they've changed venues this year. It's always nice to see our friends, doctors and nurses outside of the hospital environment. Alex hopes to see his little friend Isabella before she goes in for a Kidney Transplant at the end of the month.
We hope everyone has a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, June 1, 2006 8:20 AM PDT
Hi Everyone -
I can't believe it's June 1st! Alex is doing pretty well. We're still trying to sort through our insurance mess. In addition to trying to get CHLA covered we're now trying to get his Epogen. Apparently Blue Shield's cutoff for getting it is a hemoglobin of 12.0 and Alex's was 12.1 so they wouldn't give it to us even though his doctor wanted him on it for another month. It won't hurt him to not have it but it would have been better if he was able to get it. Alex of course was thrilled to learn that he didn't have to have the shots for now since they really hurt. Alex will have labs drawn at home next week so we'll see if his hemoglobin is up or down. It hasn't gone up on it's own since his kidney's were damaged. His kidney functions are looking better so maybe he will turn the corner and start making his own red cells.
The kids are counting down the days until summer vacation. I think the teachers are counting too :-) We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Tuesday, May 23, 2006 8:03 PM PDT
Hi Everyone -
Alex had his monthly visit to CHLA yesterday for Pentamadine and IVIG. I asked when he would get to stop the IVIG and was told that since he's still on three immune suppressants it wouldn't be for awhile. His hemoglobin is up to 12.1 and he will continue to get Epogen shots once a week for another month. I guess it was wishful thinking that his Eosinophils would be lower. They were 17.7 which I think is close to the highest I've seen them.
Right now we're dealing with a HUGE insurance issue. We have Blue Shield of CA and they are no longer contracted with University Children's Medical Group which all the doctors at CHLA are in. They cover hospital services, but no doctor services. We're trying to get an exception for continuation of care so we can stay at CHLA. We've been there for almost 5 years expect for our time at Duke and we don't want to leave.
Emily had a great birthday. She and her friends had fun bowling. She did manage to get a spare (bumper assisted). Alex got a strike and a few spares. He wants to play in a league so I'll have to check into it.
We're getting springitis around here. We want school to be out and the kids don't get out until the 3rd week in June. There's a lot going on the last weeks of school so I'm sure it will go by pretty fast.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, May 17, 2006 2:17 PM PDT
Hi Everyone -
I had a wonderful Mother's Day and Alex and Emily made me some cute things. I also really enjoyed my retreat with Tamah. It was very relaxing!
I forgot to mention in my last update that Alex has grown 2 cm and the endocrinologist is very pleased. He wants to stay at 3/4 of a dose of growth hormone due to the blood sugar issues. Alex is still on a diabetic diet and has lost a good deal of weight. The endocrinologist was happy with that as well.
I also forgot to mention that my mom is home and is doing well. She is still attached to a few machines and IV's that she'd like to get rid of but since she had a staff infection they want to be really sure it's gone before they discontinue the antibiotics. We took her out to dinner last weekend and it was a production with all her tubing and backpacks to carry but we did it. She was thrilled to be out of the house. It kind of reminded me of the days right after transplant when I had to carry three pumps for Alex and all our junk to the Day Hospital.
Emily is going to be 7 on Saturday. She's having a bowling party and can't wait. I can't believe my baby is growing up so fast. She was 2 when Alex was diagnosed. I feel like I've missed a lot and she's gotten the short end of the stick, but she's a happy kid. If you have a minute, sign the guestbook and let her know you're thinking of her too.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Friday, May 12, 2006 6:52 PM PDT
Hi Everyone -
We've been busy around here. Last weekend we went to San Diego. The hospital gave us tickets to Sea World and Legoland. The kids enjoyed both parks, but Alex enjoyed Sea World more. He still really enjoys the Shamu and Dolphin shows. Emily really liked Legoland. She enjoys going on rides and that's not Alex's favorite thing to do. We were also able to spend some time with Uncle Richard and Aunt Kim which is always fun :-)
Alex's labs from this week looked pretty good. His hemoglobin is still only 11.3 even with the weekly Epogen shots, but hopefully it will rise more soon. His eosinophil count was way down so we're hoping that it stays down. This is an indicator of how much GvH is going on so we want the number to be low. It would be nice if the GvH was finally starting to burn itself out. Alex's skin is looking pretty good and he's getting over his cold. Thankfully it's not as bad as the last one.
This Sunday my friend Tamah and I are going on our annual Mother's Retreat for a few days. This year we're going wine tasting. We're going to a Day Spa one day and we also plan to hit the yarn stores. Steve and the kids will be on their own but I'm sure they'll survive for a few days.
We want to wish all the mom's out there a very Happy Mother's Day. We'll also be thinking of all the mom's we know whose beautiful children are no longer with them.
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Sunday, April 30, 2006 9:00 PM PDT
Hi Everyone -
Well, we had a two week reprieve. Alex has a cold AGAIN! He's not a happy camper. I'm hoping that since he's off the Zenopax IV that he will be able to shake it easier. The last cold lasted 3 months.
Alex had his monthly clinic visit last Monday for his IVIG and Pentamadine. His counts looked pretty good. His hemoglobin is coming up nicely with the Epogen. We went back to giving the dreaded shots last week. He's now trying to get out of the shot he needs tomorrow. He says the needle isn't the problem, but the medicine stings. He's great with his nightly growth hormone injections.
The Pennies for Patients program that Alex started at his school has raised $1,150 in two weeks. This is the last week of the program so we'll see how many coins the kids bring in this week. I personally think they should re-name the program Coins for a Cure.
Emily has been keeping busy with school and art class. Last week she came home from art covered from head to toe with paint. She actually asked if I could put her in the bath. That must have been a first!
My mom is back in the hospital. She's been in "jail" for 5 of the last 6 weeks. They can't seem to get rid of the infection in her knee and she's been in a lot of pain. She has another procedure tomorrow.
We hope everyone has sunny days ahead. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, April 17, 2006 8:41 AM PDT
Hi Everyone -
Sorry for the delay in updating. The kids had Spring Break last week and it was also the start of Passover. My mom is still in the hospital and we were hoping she would be out for our Passover Seder. I cooked for three days. We've been enjoying the leftovers!
At the beginning of the break Alex was not feeling well. He was complaining of headaches and nausea and was sleeping a lot. We're not sure what was going on, but I'm sure our cancer friends can guess where our minds were going. Alex was feeling better by the end of the week and we headed up to Lake Arrowhead. The *excitement* was when we found a mouse in the house. We somehow managed to chase it out the front door not once, but twice. The first time it ran out, Steve didn't close the door fast enough. We have no idea how the mouse got in, but it was having a field day with the bird seed we had stashed in the office.
Alex's school is going to participate in the Leukemia and Lymphoma Society's Pennies for Patients campaign. If your kids listen to Radio Disney you might have heard it advertised. Alex is the honored hero. We're kicking off the event by having Zakkai and Alex talk to the kids at lunch time today. The idea is that there is a lot of spare change out there and that it can really add up. Each classroom will be collecting money and the class raising the most money will get a Pizza Party. If you would like to support Alex's class, you can make a check out to the Leukemia and Lymphoma Society and mail it to us at 2101 Wendy Way, Manhattan Beach, CA 90266. It's tax deductible too!
We hope everyone had a nice weekend, a Happy Passover and a Happy Easter. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!
Sunday, April 2, 2006 10:03 PM PDT
Hi Everyone -
Alex had his hospital visit last Wednesday for IVIG and Pentamadine. He also saw the ENT. The ENT wondered why we were there. He said that the CT scan only showed minimal blockage and he thought Alex looked good. Alex is still coughing occasionally but feels much better. Alex's hemoglobin was down to 9.3 so we have to re-start the Epogen. Since we have a nurse come to the house to draw Alex's labs every week he can get it by IV instead of a shot. He's thrilled since the Epogen shots really hurt.
Alex had his birthday sleepover with Zakkai a month late but they had a great time and are planning another sleepover soon. I'm still not sure why it's called a sleepover since not much sleep takes place!
Emily had a great time with April Fool's yesterday. She sure has a sense of humor :-)
We hope everyone had a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Saturday, March 18, 2006 10:21 PM PST
Hi Everyone -
Well, Alex did get another bug so he's still blowing and coughing. We finally got an appointment with the ENT for the 29th. We changed our Day Hospital visit for then too. Alex had his labs drawn at home on Tuesday. They looked pretty good except for his hemoglobin which was 10. I guess that accounts for why he's been a little more tired than usual.
Our excitement here was a power outage last Sunday night. The power went out about 8:00 and didn't come back on until midnight. We found a lot of flashlights but the batteries were all dead. We did have more batteries in the house. So, go check your flashlight batteries!!! I have a ton of candles too, so it wasn't too bad.
My birthday is today, and Alex asked Steve if he had gotten me a present. Steve was in Boston all week, so he said no. Alex says, "I want to get mom jewelry, where's a jewelry store?" Isn't that sweet? When Alex was 2 he wanted to get me a red car, matchbox that is, for my birthday. So when my birthday rolls around I always joke that I want a red car.
Steve finally put the pictures of the kids in the snow up from President's Day weekend. I have taken more snow pictures since then but we need to upload them to the computer. So enjoy what's up there now :-)
We hope everyone is having a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Friday, March 10, 2006 8:13 PM PST
Hi Everyone -
Thanks for all the birthday wishes for Alex. He had a fun few days. He was going to have a sleepover but his friend Zakkai got a fever so we had to reschedule. He and Zakkai hung out all day today playing video games. I'm amazed that their eyes weren't crossing! Alex didn't go to school today because there was a field trip and I didn't let him go. He didn't want to go anyway, so it worked out fine.
Alex had his CT scan on Wednesday. His lungs are clear but his sinuses are totally blocked. They're trying to get us in to see an ENT. His nose has been running all afternoon and evening today so I don't know if he has a new bug or if his sinuses are starting to clear. They might need to do a nasal wash under general anesthesia to clear things out. The BMT docs say it's up to the ENT.
Since everyone has been asking me what's been going on with my mom I'll elaborate. She had a total knee replacement surgery December 15th and the incision got infected and never healed and the tissue started to die. They put a wound vac in to help stimulate new tissue growth. She had a big hole under her knee and it was really painful. She's been living on pain pills the last few months. Two weeks ago they did a skin graft to close the hole. Unfortunately the hole was so big that they had to take muscle from her calf to put on her knee under the graft. So, she has a six inch incision on her calf, an area on her thigh where they took the graft from and the graft on the knee. She went home yesterday but is still in considerable pain and is using a walker. She hasn't been able to drive for the last three months. She needs physical therapy on the knee but they say she isn't ready yet. She'll have a visiting nurse come in every day to change her bandages. Hopefully she'll be feeling better soon!
We hope everyone has a sunny weekend! Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Tuesday, February 28, 2006
HAPPY 10th BIRTHDAY ALEX !!!!!
Wow, it's hard to believe my baby is now double digits. Alex has decided to celebrate his birthday from noon today until noon tomorrow since February 29th is not on the calendar this year.
Alex spent Monday in the Day Hospital getting his last dose of Zenopax!!! He also had IVIG and Pentamadine. Since he's had some congestion for seven weeks now they did a sinus and chest x-ray and ordered a high resolution CT scan. Unfortunately we have to go back for the CT. But, we don't have to go back to the Day Hospital for a whole month. We were overjoyed since Alex has been going to the hospital every other week for as long as we can remember. They did increase his Imuran and he will continue to have blood drawn at home weekly to check his counts.
In other news, Emily won 2nd place at her Elementary School in the Neptunian Woman's Art Contest. She was pretty excited. When we get her art work back I'll have to take a picture of it so you can all see it.
Speaking of pictures, I can't put up the pictures from the snow just yet since I have to take them in to get them put on a CD since our camera battery died. I haven't had a lot of time since my mom is in the hospital and will be there for at least another week. She's had surgery on her knee again today so any extra prayers for her comfort and healing would be appreciated.
We hope everyone has a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Saturday, February 18, 2006 8:50 AM PST
Hi Everyone -
Alex is finally on the mend!!! He's had a really tough time the last five weeks. He still has some congestion and a cough but he feels a lot better. His tummy issues resolved when we stopped the antibiotic a few days early. The doctors decided that it wasn't worth torturing him for a few more days.
Our home health nurse came and drew Alex's blood on Tuesday and his counts looked good. We've been sitting on pins and needles waiting for them to crash, but so far so good :-)
Alex returned to school Thursday and Friday and will do some work this weekend to catch up. He gets really upset when he gets behind and then he doesn't want to go to school so I basically had to drag him in on Thursday.
The exciting news is that we had our first snow of the winter in Lake Arrowhead. Emily loves it and Alex thinks it looks cool but he'd rather stay inside by the fire and keep warm. Emily gets up at 7 a.m. and wants to go out and play. I'll add some current pictures when I have a chance so check back soon.
We hope everyone has a fun and safe holiday weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, February 8, 2006 12:27 PM PST
Hi Everyone -
Alex had his clinic visit for Zenopax, IVIG and Pentamadine on Monday. It looks like Alex has a sinus infection, so he started on another antibiotic which has given him diarrhea. They did a nasal culture and we're waiting to see if anything grows. Preliminary results show a staph infection. They'll switch the anitbiotic as soon as they have more definite results. Alex's counts still look good so they increased his dose of Imuran. The only problem is that the pills only come in 50 mg tablets and Alex needs 32 mg. So, we have to give him 3/4 of a pill. Lets hope we don't pulverize the pills trying to cut them!
Alex is struggling to keep up with his school work from all the missed days. He's home again today due to the tummy trouble. Hopefully he will be on the mend soon. Thanks for checking in on us and don't forget to sign the guestbook!!!!!
Jill, Steve, Alex and Emily
Thursday, January 26, 2006 3:51 PM PST
Hi Everyone -
Alex had his clinic visit on Monday and got his Zenopax. We saw the endocrinologist and Alex has grown a half an inch in the last four months. We would have liked to see more growth but since he hadn't grown at all in the last four years it's progress. Alex said that "you have to start somewhere". Alex was only on half a dose of growth hormone due to his blood sugar issues. Since his blood sugar has been pretty good, we're going to try three quarters of a dose and see what his blood sugar does. It's back to daily finger pokes a few times a day.
Alex did start on the Imuran on Monday and so far so good. He will have weekly labs drawn at home on the weeks we don't go to clinic. I'm thankful that Kathy, our wonderful BMT nurse, was able to set this up so we don't have to drive all the way to CHLA every week. Alex goes back in two weeks for his IVIG, Pentamadine and probably his last dose of Zenopax. It takes a while for the Imuran to kick in so we need to cover Alex with the Zenopax until then.
Alex has been battling a cold for the last few weeks but he finally seems a little better. We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, January 16, 2006 9:59 AM PST
Hi Everyone -
Well, we finally made a decision on what drug to try for Alex's GvHD. We had narrowed it down to Imuran or Pentostatin and decided to go with the Imuran. The Imuran can be given orally once a day which is a big plus and the doctors at CHLA have used it. There are some Phase II studies using Pentostatin which show promise, but they haven't used Pentostatin at CHLA, so we weren't really comfortable going that route. Plus, it's given IV every week. We will have to go in for weekly blood counts for the first few weeks Alex is on Imuran. Please pray that he doesn't have any adverse reactions to this new med. We're all a little on edge with starting something new.
We had hoped to see some snow in Lake Arrowhead this weekend but all we saw were a few flurries and a light dusting one morning. Not enough to play in :-( I had run into the shoe store in the Village to get Emily some tennis shoes and the place was packed with people getting snow boots for their kids. It was pretty funny. Too bad they didn't get to use them!
Alex has been asked to sign a few copies of the People magazine he's in. He's gotten a huge kick out of it. A lot of the teachers and staff at school had seen it as well as some friends and some counselors from camp.
Alex goes in for Zenopax on the 23rd and we hope to start the Imuran then. He also has an appointment with the endocrinologist. He tells me every night that he thinks he's grown, so I sure hope he has something to show for the nightly shots!
We hope everyone has a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Sunday, January 8, 2006 11:04 PM PST
THIS JUST IN.... Check out the January 16th issue of People Magazine. Alex is on page 97. His eyes are closed from all the flashes that went off but he now thinks he's famous!
Hi Everyone -
HAPPY NEW YEAR! I can't believe it's 2006. We rang in the New Year with our traditional get together with our friends Doug and Deborah. We had yummy food and played bridge. Deborah, I think I'll dream about that chocolate mint cake forever! If anyone gets Bon Appetit magazine and saw the Chocolate Mint Cake on the cover, that's the cake I'm talking about. It was absolutely incredible.
The kids went back to school yesterday and were happy to see their friends. Alex had his Day Hospital appointment today for Zenopax, IVIG and Pentamadine. His doctor wants to try another drug for his chronic GvHD. She threw out some options and told us to research it and get back to her. What she was really saying was call Dr. K. The drugs mentioned were Thalidomide, Cell Cept and Imuran. I don't know much about any of them. I have heard of them for treatment of GvHD, but don't know the side effects, etc. I had done some research prior to this since I don't think the Zenopax is working and I had come up with Pentostatin and Photopheresis. I'm sure we'll discuss all of these options. If anyone of our fellow travelers out there have any knowledge about the use of these drugs for cGvHD, please share :-)
Alex helped out with our little four year old friend Isabella today while she was getting her IV put in. She kept screaming that she wanted her friend Alex, so he held her hand and tried to distract her. It was too cute. Ceyone, I hope the rest of the day went well for you. We finally got out of the Day Hospital at 2:15.
We had a pretty crazy few weeks around the holidays. My mom had knee replacement surgery on the 16th of December and has been in and out of the hospital with complications. I was helping her and Grandma came to help with the kids so Steve could work. Thank you Grandma! We did get up to Arrowhead for almost a week. Unfortunately it didn't snow. The kids kept hoping it would. We had a relaxing time and enjoyed our evening fires and walks in the Village. The air is so crisp and clean up in the mountains. I wish it were that way down at sea level, but I think we live in "Smog Land".
We hope everyone's year is off to a good start. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, December 19, 2005 6:09 PM PST
Hi Everyone -
Sorry I haven't posted between hospital visits. Just remember that no news is good news! Alex had an appointment today for his IV Zenopax. He also had his neuro-psych testing done. We do this once a year (he's on a 5 year study). They look to see if there are any long term effects from all the radiation and chemo Alex had. They look at several things including overall IQ, processing speed and memory.
His counts look good. His hemoglobin only dropped to 13.6 with no Epogen. So, Alex is happy that for the time being he doesn't have to have the nasty shot. The only concern right now is how bad his GvH is on his face and hands. We have no idea why he flares. There doesn't seem to be a rhyme or reason to it.
A few weekends ago we went to the Camp Ronald Mc Donald Holiday Party. It was at the Warner Brothers Studio Ranch. The kids had a fun time and got a lot of nice gifts. Today at the hospital there were some astronauts that were signing autographs. Alex got his picture taken with them. He also got a holiday gift. He decided to skip the Santa part. I told him he could sit on Santa's lap and wish him a Happy Hanukkah, but he didn't think that would be a good idea.
We hope everyone has a festive holiday season. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, December 7, 2005 8:54 PM PST
Hi Everyone -
Alex had his clinic visit today for his IV meds. His hemoglobin jumped to 14 so we can try to give the Epogen shots every other week and see if his levels stabilize. His blood pressure was low so we're decreasing his blood pressure meds. I'm hoping he can get off of them completely soon :-) Alex was excited to see that he'd grown a little. When I say a little, I mean a little, as in maybe a quarter of an inch. The height measurements aren't super accurate in oncology, so we'll try to get Alex measured in endocrinology the next time we go in. Any growth would be progress since he hasn't grown in four years.
People magazine was at CHLA today doing a story on Tay Bears and it's founder Taylor. Alex was in a picture with Taylor and some other kids at the Day Hospital and it might be in one of the next few issues. Alex wasn't in all the pictures since he'd had enough near the end of the photo shoot and walked off. I guess he won't make it as a model! If he's in the photo, he's the one standing next to Taylor with his IV pole. Personally I think the photo looked better with him in it, so we'll have to wait and see which picture they actually use. I'll keep y'all posted.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, November 28, 2005 2:11 PM PST
Hi everyone -
Alex is almost over his month long cold. He says he feels a lot better and was very happy to go back to school today. The kids have shortened days this week and get out at 12:40 p.m. due to parent/teacher conferences. Our conferences are tomorrow and Nana is going to come over to watch the kids.
We had a very nice Thanksgiving up in Lake Arrowhead with Nana and Uncle Steve and Aunt Janet. Uncle Steve had a fun time tending the fire. It was pretty nippy up there but we were nice and toasty inside with Uncle Steve's inferno. It got so hot we had to open the windows! Nana cooked a nice Thanksgiving feast that we enjoyed for two days! It was nice just hanging out and relaxing.
I got a call from Duke today that they didn't run Alex's immune studies in August so they need to be done again. We're not too happy about it, but there isn't much we can do. They're not sure if the blood was lost or the tests just weren't run. Alex will have his blood drawn again next week and sent to Duke. His chimerism test came back at 100% donor cells. We expected this, but it's always nice to see it in black and white.
We hope everyone had a nice Thanksgiving weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, November 21, 2005 5:55 PM PST
Hi Everyone -
Alex is still coughing and blowing. Saturday will be four weeks of feeling cruddy so I hope this virus or whatever it is takes a hike soon!!! Alex got his IV Zenopax today and his labs looked pretty good. His hemoglobin was up to 12.6 We're still giving one shot of Epogen a week. The endocrinologist had told me at one time that the Growth Hormone can also help to raise the hemoglobin, so that may be working in Alex's favor.
As Thanksgiving approaches, we have so much to be thankful for...Dr. K at Duke who is always there for us, our doctors and nurses at CHLA, Chai LIfeline and Camp Simcha, Camp Ronald Mc Donald for Good Times, ALL-Kids Relapse, BMT and GvHD listmates and Caringbridge friends for all their support and encouragement. And last but not least, our family and friends who have been on this roller coaster ride with us from the beginning. We couldn't have gotten to where we are without all of you. We hope everyone has a wonderful and safe Turkey Day!
Jill, Steve, Alex and Emily
Saturday, November 19, 2005 12:54 PM PST
Hi Everyone -
This week has been pretty stressful medically. Alex is having a hard time kicking the respiratory infection that he's had for the last three weeks. He didn't go to school on Monday. He tried to go to school on Tuesday and came home around 10 a.m. I took him to the local pediatrician on Tuesday to listen to his lungs and do a chest x-ray. She was going to put him on Zithromax but she called CHLA and they told her if the chest x-ray was negative not to give the antibiotic since he's already on Cipro. Well the chest x-ray was negative, so no Zithromax. He went to school Wednesday and they sent him home around 11 a.m. and told him not to come back until he was better. I called the hospital and got another one of our other transplant physicians (we have five that rotate) and she said she had no problem with the Zithromax, so we finally got some. Why can't the doctors ever be on the same page??? After a few days on the Zithromax Alex seems a little better but he is far from being completely better. He has an appointment at CHLA on Monday for his Zenopax so he will get checked out again. I'm thankful that this is the first respiratory infection Alex has had since his transplant since they can be really hard to clear.
I have a nasty cough but only feel bad when I'm coughing. The biggest problem is trying to get some sleep. I spend half the night awake and coughing. Emily has a little bit of a cold but nothing major and Steve was over his cough before he left for Philadelphia on Thursday but who knows what germs he will bring home with him today.
It's been unseasonably warm here. We've seen temperatures in the high 70's and low 80's. I actually wish it would cool off! I know some of the country is buried in snow right now and here we are with our beach days.
We hope everyone has a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Saturday, November 12, 2005 10:00 AM PST
HAPPY 3RD RE-BIRTHDAY ALEX!!!!!!!!!!!!!!!!!
It's so hard to believe it's been three years since Alex received the gift of life from a mom who was thoughtful enough to donate her baby's cord blood. This journey sure hasn't been an easy one but we're so thankful that Alex's transplant was a success. There are still many bumps in the road to recovery but Alex handles each new crisis like a champ.
Some people have asked us recently if the leukemia is gone. YES, Alex is in remission! He suffers from chronic graft versus host disease from his transplant. GvHD is basically a whole new disease. Currently his major problems can be attributed to GvHD. Some of the other issues he's dealing with are related to the high doses of radiation and chemotherapy he received prior to his transplant. He is not on chemo and has not had any since his transplant. The medicines he receives now, both oral and IV, are to treat his GvHD. GvHD can be life threatening so it has to be controlled. In order to control it you have to suppress the immune system. When you suppress the immune system you're at risk for bacterial, viral and fungal infections. Alex takes oral and IV medications to try to cover him for these types of infections. He currently takes:
Cipro - antibiotic
Acyclovir - antiviral
Voriconazole - anti-fungal
Prednisone - steroids
Cortef - steroids
Prograf/FK506- immune suppressant
Enalapril - to lower blood pressure
Magnesium - to keep levels normal
Calcium - to help with bone density (Alex is 5 standard deviations below normal)
Pepcid - helps his tummy cope with the above meds
Zenopax - by IV every other week for GvHD
IVIG - by IV once a month to give him extra antibodies
Pentamadine - breathing treatment once a month to protect against pneumonia
Growth Hormone - nightly injections
Epogen - weekly injections to stimulate red blood cell production
Protopic - cream for skin GvHD
Triamcinalone - cream for skin GvHD
Bactriban - antibiotic ointment for folliculitis
The next question we often get is "how long does Alex need to be on all these meds?" Well, we have no idea. They say that the GvHD will eventually burn itself out but when is the big question. Tomorrow would be nice :-) We pray that one day Alex will be med free and lead a normal life. Until that day this is our *normal*.
Thank you for continuing to share our journey with us. Love,
Jill, Steve, Alex and Emily
P.S. - Check out the new pictures!
Wednesday, November 9, 2005 10:13 PM PST
Hi Everyone -
Alex had his clinic visit for Zenopax, IVIG and Pentamadine today. It was a long day since our nurse went by the book and wouldn't hang one drug after the other like we usually do. She said she wasn't comfortable with doing this in case Alex had a reaction. He's been getting this combination of drugs forever and hasn't had a problem so we usually don't wait 45 minutes between drugs. I understand her point of view but I wanted to get out of jail sooner. The only bright side to the day was that we were able to visit with our friend's in the next *room*. We opened the curtain between the two beds and had a nice visit. Ceyonne I hope the kids conked out on the way home!
Alex has been having a hard time sleeping and has been up in the middle of the night a lot so we decided that we were going to give his steroids in the morning instead of in the morning and evening to see if it helps make him less wired. It's still the same dose, but we'll give it once a day. We also tweaked a few other meds, but nothing major.
Alex's skin that is exposed to light is very red from his GvH. The doctor would like for us to keep long sleeves on him and find some gloves. If anyone knows where I can get some light weight cotton or silk gloves in kids sizes, please pass the info on to me. I'm not sure how hard it's going to be to get Alex to wear them when he's outside, but we need to try it.
Alex is still coughing but the doctor said his lungs sound clear. Steve also has the nasty cough and was up in the middle of the night last night too. Emily and I hope we can avoid the lovely germs.
Last weekend we went to Knott's Berry Farm with Chai Lifeline. They had a picnic and gave us tickets to get into the park. We enjoyed the picnic but the kids decided that they weren't in the mood to go on the rides so we gave the tickets back. Then they decided that they wanted to go to Downtown Disney since it was only a few minutes away. We figured we were already out for the day so we went. It was a nice day for walking around outside. We told the kids they could each have $10 to spend and that was it. Alex found a Lego at the Lego Store and Emily went to Build a Bear. She really wanted to go to Libby Lu where they do your make-up and hair but we said NO! A lot of our friend's have yearly passes to Disneyland since it's only 30 minutes from here. I'm glad my kids are happy with $10 since it's a LOT cheaper than getting into the theme parks.
I almost forgot to mention how Steve tried to kill me playing Badminton the other day. I was about to croak after about 20 minutes and I'm still sore! I think I missed more shots than I made. I guess it was good exercise (for me anyway). Steve got his exercise that evening when he went back for a lesson :-)
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, November 3, 2005 9:15 AM PST
Hi Everyone -
The kids had a fun Halloween. Alex was a Ninja and Emily was a Princess Fairy. I'll have to put some pictures up over the weekend. Alex only went to a few houses on our block since he can't eat the candy because it has sugar but he did have a great time handing it out. Emily walked our feet off. We had some spooky music playing and people kept telling us they loved it. It was a CD that one of the Dad's from school made and they sold at the carnival last week. He recorded a lot of the kids screaming and then added sound effects. He's a sound editor and was recently up for an Emmy Award.
The kids had fun at the school carnival last Friday. I worked the Pizza and Hot Dog booth for a few hours. It wasn't too busy on my shift. Alex had fun running around with his friends. Emily liked all the arts and crafts. We all enjoyed the yummy food.
On the medical front things are stable. Alex does have a cough but no other symptoms of a cold. He's hanging in there. He has his long clinic day next Wednesday for Zenopax, IVIG, and Pentamadine.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, October 27, 2005 5:35 PM PDT
Alex had his clinic visit yesterday for Zenopax and labs. His labs are looking good. His liver functions were in the normal range for the first time since his transplant. They weren't that high before, but I just love to see things in the normal range :-) His kidney functions are still a little on the high side but o.k. His hemoglobin is up to 11.1 and platelets were 242. His blood pressure has been a little on the low side so they decreased his dose of Enalapril (blood pressure med) from 3 pills a day to 2. We'll continue with 1/2 doses of growth hormone for now. His blood sugar was under 100 yesterday a.m. and that's what they want to see. We now only have to do finger pokes twice a day every other day instead of every day. Alex still needs to follow a diabetic diet. He lost 2 pounds in the last two weeks which he's happy about, but he's not thrilled with the diet. He's a carbivore and having to give up carbs is just no fun. He's been thinking about what he's going to eat when he can have anything he wants again. I think he's even dreaming about food!
The interesting thing yesterday was finding out that our nurse for the day lives around the corner form us. She asked if we had our Halloween Carnival yet and we told her it's Friday. She asked if we still had raffle tickets. She bought 5 and proceeded to sell 6 more to other nurses. I decided that's the best way to sell things...have other people tell you they want what you've got! Thanks Martie.
We had a fun time at Camp Ronald Mc Donald for Good TImes last weekend. We shared a cabin with a very nice family and met many other nice families. Alex really enjoyed being the stage manager for the talent show. He introduced all the acts. He was also in charge of music for the musical chairs game and got a kick out of that. He and Steve did some archery too. Emily had fun with arts and crafts and fishing. She was bummed that she didn't catch a fish this year. We saw one staring up at the worm but he just wouldn't bite. Those fish are sure smart. Emily loved all the counselors and kept calling them her buddies. She kept running up and hugging all of them. The counselor that was assigned to our family is an ALL survivor herself. She had ALL when she was 13 and she is now 23. She started out as a camper there and is now a counselor. We thought that was pretty neat.
We hope everyone has a fun and safe Halloween. Thanks for checking in on us and don't forget to sign the guest book!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Friday, October 21, 2005 11:15 PM PDT
Hi Everyone -
Alex has re-started half doses of his growth hormone! Actually he only missed one dose. On Tuesday morning I had to open a new box of strips for our glucose machine and when we tested Alex's blood we got 99, right in range. Knowing that there was no way the GH was out of his system I suspected that the previous strips were damaged in some way and were giving us false readings. I also couldn't figure out how we could get 105 through his port and 200's at home. I called our endocrine nurse and our doctor agreed to try to continue with half doses. So far so good. The only bummer is that we have to keep Alex on a diabetic diet. He's not too thrilled, but being the champ he is, he's doing o.k. with it.
We're off to Camp Ronald Mc Donald this weekend. The kids have really been looking forward to it since they had such a fun time last year. It looks like it shouldn't rain like it did last year, so that's a plus.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Friday, October 14, 2005 8:31 PM PDT
Quick Monday Update -
They stopped Alex's growth hormone for the time being as his blood sugars were just too high. Alex is a bit upset and concerned. He asked us if he could die if he didn't grow. We assured him that wasn't the case and that as soon as we could we would re-start the GH. We also increased Alex's FK506 since his skin GvH has really flared. His FK level was low last week but we were trying to give his kidney's a rest so we didn't increase it. Alex came home from school early this a.m. complaining of nausea. It's sometimes hard to figure out what's real and what's not but since he didn't want to eat most of the day for fear of it coming back up I guess you could say it's real. He seems to be feeling better this evening but he does have a little cold.
Hi Everyone -
Alex's blood sugars are still high. The endocrinologist decided to cut the growth hormone dose in half and see if that helps Alex's sugar levels. We're still counting carbs and watching sugars. We're not too convinced it's helping, but we're still trying. We have to call the endocrine nurse on Monday with Alex's levels from the weekend.
We're up in Lake Arrowhead this weekend. The kids are going to Color Me Mine tomorrow morning from Coach Art. Coach Art is the program that sent them to Color Me Mine over the summer. They made some fun things before and are looking forward to it.
Alex has a lot of homework to catch up on since he wasn't in school on Thursday. Emily's teacher said that since they were out for a religious holiday that she wasn't going to give them any work. Alex's teacher loaded them up. He says it's not fair.
We hope everyone has a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, October 10, 2005 8:51 PM PDT
Hi Everyone -
My pin cushion has had 5 pokes today. He had his port accessed and had a flu shot at clinic. I gave him his Epogen and Growth Hormone shots and I had to poke his finger for a blood sugar tonight. We met with the nutritionist today and she was VERY helpful. She broke down how many carbs Alex could have and when he could have them. She also gave us some ideas for snacks. Alex's blood sugar was 105 this morning which we thought was great. However, the endocrine people say that it could be low since it was drawn through Alex's port. When we go back in two weeks we'll get a level through his port and a finger poke for comparison. Alex's labs looked really good today. In fact I think they're the best we've seen in awhile. His kidney functions are back down to almost normal. We know his kidney's are recovering since they're processing out his FK506 more rapidly. They docs here decided to keep him on his current low dose of FK instead of increasing it to give his kidney's a rest. We'll have to watch his skin closely for any GvH flares.
I'm really wiped out tonight since we had a really looooooong day at clinic. We hope everyone's week is off to a good start. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
p.s. - Alicia - thanks for the background. Steve got it to work and I have no clue how he did it!
Thursday, October 6, 2005 9:59 PM PDT
Hi Everyone -
Alex says he feels like one big pin cushion. We have been poking him multiple times a day. His blood sugar is still high. The endocrinologist is not happy. We now have to monitor his blood sugar before a meal and 60 and 90 minutes after a meal for the next three days. Alex has clinic on Monday and they are going to run a Hemoglobin AIC test. This will tell them how much sugar is sticking to his red cells. They will also do a fasting blood test to check his sugar so we can see how accurate our little "poker" machine is. In addition to all of this, I had to give Alex his Epogen shot on Monday. He said he really hopes the Epo kicks in because if it doesn't they're probably going to make him get the Epo more than once a week.
Fire update : My mom said that her house smelled like an incinerator from all the smoke. She was considering coming to stay with us but running the air conditioning seemed to help so she stayed put. She also said that one evening the ash was falling from the sky in huge flakes like snow.
We had a very nice New Year Celebration. Grandma came down for the holiday and my mom brought a feast over. We all had a nice time and ate way too much yummy food. Alex ate so much I thought he was going to pop. We took a 35 minute walk after dinner and the next morning his blood sugar was 130. We thought it would be sky high after all the carbs he ate, so we think the walk helped. We're now trying to get him walking every evening. Just one more thing to add to our "to do" list where Alex is concerned. I'm not sure there are enough hours in the day to fit everything in!
Jennifer - Thanks for ordering the wrapping paper. We knew someone had ordered on-line but didn't know who until you signed in. The kids raised $77.50 for their school. Our next fundraiser is the Halloween Carnival on Friday October 28th. Last year we all had a blast. If anyone is interested in coming, it's at Meadows Elementary School from 4:00 - 9:00 p.m. In addition to all the games and food, they have a super silent auction. Hope to see some of you there!
Thanks for checking in on us. We hope everyone is having a sunny week. Don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, September 29, 2005 10:24 PM PDT
Hi Everyone -
Alex had clinic on Monday. Steve had to take him since I was still feeling pretty bad. He got his Zenopax and started his Growth Hormone. We have to monitor his blood sugar and it's been going up. Today's a.m. fasting level was 140 and two hours after lunch it was 256. They want the a.m. level under 100 and the p.m. level under 150. If his levels continue to rise they will probably stop the growth hormone until the prednisone is weaned or gone. As Alex's doctor said, "this is not good".
Some of you may have seen the California fires in the news. They are very close to my mom. She said she didn't want to go to bed last night since she could see the flames on the hill. The winds have shifted away from her for the moment. I hope the firefighters can safely put out the fires soon!
Emily lost her other upper front tooth. She's now lost more teeth than Alex. Alex's teeth are messed up from all the chemo and radiation he's had. He might need some "help" getting some of his baby teeth out. We keep telling him to wiggle his teeth.
Alex got a haircut yesterday. His hair was getting really long on top and in the back. His GvH has been attacking his scalp and he has lost a lot of hair in the front so he didn't want to get his hair cut. He was happy he did because it looks so much better :-)
The Jewish New Year is next week so we want to wish everyone who celebrates L'Shanah Tovah. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Friday, September 23, 2005 9:09 PM PDT
Hi Everyone -
*******CHECK OUT THE NEW PICTURES*********
Alex went in for labs on Wednesday. His Creatinine is down to 1.3 and his BUN is 29. His hemoglobin was 10.2 and he was begging for a shot of Epogen which they gave him. When have you known a kid to beg for a shot? He has been feeling pretty sluggish since his hemoglobin dropped. Unfortunately the Epo doesn't work overnight. It takes a few weeks to kick in.
We were supposed to get Alex's growth hormone delivered today so we could start it on Monday but we got a call yesterday that they couldn't ship it. Apparently it was approved for the pen type of cartridge and the prescription was written for the vials. We want the vials so today Steve has been on the phone trying to get things sorted out. It now looks like we should have the drug in hand tomorrow. The home pharmacy also managed to ship us the wrong concentration of the Epogen so now we're trying to get that sorted out. Can't anything be easy???
In other news, Steve came down with a cold last weekend and I succumbed yesterday. Thankfully both the kids are still fine. Steve still isn't 100 nd I feel like a semi-truck has slammed into me. Alex has been extra diligent about washing his hands. He doesn't want to get our cold. He was so cute yesterday. He made some popcorn and offered me some. After taking my bowl he immediately went to wash his hands. He says he's not taking any chances :-)
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Friday, September 16, 2005 10:40 PM PDT
Hi Everyone -
Alex's Creatinine was down to 1.5 and his BUN was 32. His FK dropped to 14.4 We're going to continue with a reduced amount of FK and re-check labs again on Wednesday. It's been a lot of driving to and from the hospital lately. I sure wish the price of gas would fall!
It looks like our crappy insurance has approved the Epogen shots for a few months. They also approved the Growth Hormone. I'll be happier when I have both drugs in hand. There is some concern about the GH shots since Alex is on more steroids now than he was when we first started the whole process of testing. We will have to check his blood sugar daily for awhile. He hates finger pokes. He says they hurt more than having his port accessed. We have an appointment on the 26th with the endocrine nurse to go over everything and start the shots. Of course this all hinges on us having the drug by then.
The kids are enjoying school. They both like their teachers and are happy to be back with their friends. They've both already had play dates. The fundraising has already begun too. If anyone is interested in wrapping paper, you can check out
http://www.innisbrook.com/acb/basket/index_child_reg.cfm?internet_id=I58944B&DID=7 Alex 's ID # I58944B and MEADOWS ELEMENTARY should come up. Our school gets fifty percent of what's sold.
Alex and Emily also started Hebrew School last week. Alex goes two days a week and Emily goes one day a week. The nice thing about Hebrew School is NO HOMEWORK!!!
Last weekend we went to the Kids Pool Party at the Badminton club. The kids had fun. I enjoyed meeting some new people. This weekend we're up in the mountains. It's cooled off here and is really nice. We're planning on going on a hike tomorrow.
I forgot to mention in a previous update that Emily lost a tooth the day we were leaving Maryland for North Carolina. She was concerned about the tooth fairy being able to find her tooth. The tooth fairy did come and apparently the way Emily figures it, there is a tooth fairy in every state. I love the way a six year old rationalizes things :-)
We hope everyone is having a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook.
Jill, Steve, Alex and Emily
Wednesday, September 14, 2005 7:13 PM PDT
Hi Everyone -
Really quick update. Alex had clinic today and his kidney functions were really out of whack. For those in the know, his creatinine was 1.7 and BUN was 33. His FK level was 21.3 We're not giving his FK dose tonight and he's getting a very reduced amount tomorrow. We have to go back for labs on Friday. Please pray that Alex's kidneys start working better to process out the FK and that his levels are better on Friday. His hemoglobin dropped to 10. 3 so he got an Epogen shot in clinic. One shot probably won't do much, but we have to fight the insurance company for me to give the shots at home. We'll see what his hemoglobin is in two weeks and go from there.
I'll update with news about the first week of school and other fun stuff when I have a bit more time this weekend. Hopefully we'll get some new pictures up too :-)
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Sunday, September 4, 2005 9:44 AM PDT
Hi Everyone -
We're home from the sweltering south. We had a great trip and had a lot of fun visiting with our family. Our first stop was in Maryland. The kids had a blast playing with their cousins and we enjoyed visiting with the adult cousins. We were also able to spend some time with Uncle Bernie and Great Aunt Lillian. Thanks for having us for Sunday brunch. Thanks to the Marder's for hosting us and thanks to the Friedland's for the great BBQ dinner.
Our next stop was North Carolina. We dropped Emily off with cousins Howard and Sandy, and Steve and I headed to Duke with Alex for two nights. Alex had an echo cardiogram, a pulmonary function test, a chest x-ray and a lot of blood drawn. He also had his regular infusion of Zenopax. We don't have the results of the blood work, but the other tests looked good. The only "problem" we had was that we had to be in isolation due to Alex's chicken pox exposure. They take isolation very seriously at Duke and we had to wear a gown and gloves and Alex had to wear his mask whenever we left his room. This meant that we had to traipse through the hospital in this garb for all of Alex's tests. We also had to use a special bathroom and they clean it between uses. I told Alex he should be thankful that he was never on isolation when he was a patient there.
Dr. K changed around a few meds to try to help Alex's kidneys out. She did say that nothing is going to change overnight and that it might not change until he is off all immune suppressants. Steve asked when that might be and she said "before he goes to college" :-) Alex's hemoglobin did drop to 12.4. When it drops below 11 (and it will) we need to give him Epogen shots. All in all, I think she's pleased with Alex's progress.
While at Duke we were able to say Hi to Khalita. We also were able to meet up with Carrie, Angel Jordan's mommy, for some ice cream. It was great to see both of you!
After our Duke visit, we headed back to Howard and Sandy's (aka wonder woman) for the rest of the week. Howard's brother, wife and daughter were in town, so we got to meet some other cousins too. The kids had a great time with Pisher the doggie. Sandy says that Pisher misses the treat givers already. Guess they spoiled him. Thanks again for taking such good care of us for the week!
The kids start school on Wednesday but the action starts on Tuesday. Steve and I have a meeting with the principal and Alex's teacher and Emily has a meet and greet with her 1st grade class. I think they're both looking forward to school starting. Alex's next visit to the hospital is scheduled for September 14th.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, August 22, 2005 8:57 PM PDT
Hi Everyone -
Today is a day of reflection for us since four years ago our world was turned upside down when Alex was diagnosed with leukemia. When we heard the word cancer we thought it was a death sentence. It used to be. Because of clinical trials like the ones Alex has been on kids now have a fighting chance at life. We were thrown into the world of oncology where we quickly learned all there was to learn about radiation, IV chemo, oral chemo , chemo that came in the form of shots and chemo that was given in the spine.
We watched Alex struggle to take his oral chemo and then vomit it right back up so that he had to take it again. We watched Alex sit and scream while we held him down for his shots. We watched Alex get back poke after back poke of chemo. We watched Alex on a video monitor after they closed the vault where Alex lay perfectly still for his cranial radiation We constantly watched for fever since one about 100.8 was an automatic three day stay in the hospital. We watched a five year old Alex learn all about his chemo so he knew what was going on. Hence the nickname Dr. Alex. We watched Alex struggle through 11 months of harsh treatment only to relapse. We watched Alex have more radiation and more chemo to wipe out his marrow for a bone marrow transplant. We watched Alex's slow recovery from transplant. We watched Alex struggle with having no platelets and low hemoglobin. We watched Alex scratch his skin rashes that were so bad that he was screaming for the pain to go away. We watched Alex lose his innocence and his childhood.
We're thankful for all of our doctors and nurses at Duke and CHLA. We're thankful for researchers who developed the technology for transplants. We're thankful that Alex and the rest of us still have a sense of humor. We're thankful for our family and friends that have been with us every step of the way. We're thankful for our TNT friends who are raising money for a cure. Go Team! We're thankful that four years after *D* day Alex is still with us when we know so many others who are not. Alex's battle isn't over. He still receives IV meds every other week. He takes 22 pills a day. He has to put creams on daily. It's the price he has to pay for survival.
We're heading to Duke next week for Alex's 3 year post transplant testing. We're doing it a little early so we don't have to take Alex out of school for a week in early November. We're stopping off in Maryland to see cousins, aunts and uncles. We'll continue on to Duke and will stay with cousins in Raleigh. We're looking forward to visiting with our family.
Jill, Steve, Alex and Emily
Thursday, August 18, 2005 9:48 PM PDT
Friday Update -
The big news here is that Alex lost a tooth last night. It's the first tooth he's lost since before transplant. I'll have to take a picture of the toothless grin this weekend. Emily also has the same tooth loose. They've both been wiggling them.
Alex's stim test went well today. The drug he took for it makes one sleepy and can lower blood pressure. Alex's blood pressure was o.k. but he totally conked out. He woke up long enough to eat a few bites on the way home and then fell back asleep. He took a five hour *nap* today. His FK506 level was in range today, so we'll just keep applying the creams to Alex's rash.
Tonight we watched Alex's video from Camp Simcha. I think I should have taken a motion sickness pill before watching. Steve actually had to leave the room! We also watched part of Zakkai's since Alex brought it home for the chicken pox kid. I spoke to Tammah tonight and Zakkai is doing well. I think Alex was in Zakkai's video more than his own. I wish they had a Camp Simcha for mom's. It looks like a lot of fun.
We hope everyone has a great weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Hi Everyone - (Thursday)
Alex made it home from camp safely. His flight was delayed for 2 & 1/2 hours out of Newark, so he didn't get in until 11 p.m. and we didn't have him in bed until after midnight. Then we had him up at 6:30 a.m. to head to clinic yesterday. He was so tired that he slept through most of the visit. He doesn't even remember the doctor coming in to examine him. His labs looked pretty good except for his kidney functions which continue to rise. They want to take him off one of his immune suppressants, but since his skin is flaring so badly right now it's going to have to wait a few weeks. They're finding that the combination of Rapamune and FK506 is causing kidney damage so they're taking all the kids off this toxic combo. Alex's FK506 level was low so we're going to re-draw it tomorrow. We're going in for Alex's growth hormone stimulation test tomorrow morning and we'll meet our BMT nurse first to re-check his levels. If his level is low, that could explain why his GvH is flaring.
It's with a heavy heart that I tell you our friend Cody passed away today. He fought a long and hard battle. We'll remember the good times we all had at Duke, but it's so hard to see another of our "cell mates" lose the battle. www.caringbridge.com/va/cody
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Tuesday, August 16, 2005 9:48 AM PDT
Hi Everyone -
Alex is on his way home from camp today. His flight should arrive at LAX around 8 p.m. tonight. We have to be at clinic tomorrow at 8 a.m. Due to Alex's chicken pox exposure they want to isolate us and Alex can't take his mask off in the hospital. What fun!
Our friend Cody who we had hoped to see at Duke is now fighting for his life and it doesn't look good. We are so very sad. I dread having to tell Alex. Please say a prayer for Cody and his family or send good thoughts his way. www.caringbridge.com/va/cody
Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Friday, August 12, 2005 6:35 PM PDT
Hi Everyone -
I wish I could say that there's no news here, but there's never a dull moment. We got a call from Alex late Wednesday evening that his skin GvH was flaring again and he was miserable. I told him to go to the infirmary and see the doctor. The doctor called and said he checked him out from head to toe and he had no infections but his skin was really red. He called the transplant doctor on call at CHLA and they decided to increase his steroids to 10 mg a day. He was on 10 mg every other day. That seemed to help because Alex called me yesterday and said he felt better. They had a fun day driving around in a limo in NYC. They also went to a Toys R Us for a shopping spree. Alex said he had fun but still wanted to come home.
Today I got a call at 9:00 a.m. from my friend Tamah telling me that Zakkai has chicken pox and that they were going to camp to pick him up. Luckily they were on the East Coast so it was just a long drive. Zakkai has been off chemo since last October, so he should be o.k. We were concerned about Alex since it would be really bad for him to get the chicken pox due to all the immune suppressants he's on. I paged Dr. K and she told me to sit tight and take the wait and see approach. She thinks Alex should be covered by the IVIG he gets once a month. He had an extra dose before he left for camp and he gets one when he comes home. She didn't want to increase his anti-viral medicine because she said his kidney's couldn't handle it. So, we'll try not to worry about it and hope that Zakkai doesn't get too sick and that Alex doesn't get it.
Tamah and I think that Zakkai leaving camp might have been the straw that broke the camel's back. I've heard from Alex three times today that he wants to come home. Zakkai talked to him before he left and told Alex to stay and have fun. Even if I thought he should come home before Tuesday, it's nearly impossible. Camp Simcha is orthodox and tonight is the start of Shabbat and it doesn't end until late Saturday night and Sunday is a fast day. Alex couldn't come home until Monday at the earliest. Since he's scheduled to come home on Tuesday, I don't see the point in him coming home a day early. He tried to call on my cell phone this afternoon and I dropped the phone and the battery fell out so I couldn't speak to him. When I got home there was a message on the machine from him saying that he definitely wants to come home Monday morning. I hope he keeps busy this weekend and doesn't dwell too much on which day he's coming home. When I last spoke to him I told him to pull himself together and have fun and I'd see him on Tuesday.
Emily has been having a fun week with play dates and today she went to Color Me Mine. Tomorrow she's going to a friend's birthday swim party. We hope to get to the beach sometime this weekend too. We hope everyone has an enjoyable summer weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, August 8, 2005 4:20 PM PDT
Hi Everyone -
I got a call from Alex last week and he was crying and wanted to come home. Apparently he called me at a bad moment. His counselor called later in the day and said he was having fun and that he had fun before and after his *moment*. I got another call today and he said he was bored and wanted to come home. No tears this time. His counselor said he's having fun and not to worry. How can a mom not worry? I just want him to have some well deserved fun. It sounds like he is having a good time but that he's a bit homesick.
Emily enjoyed her gymnastics camp last week but said that she likes swimming better. She is currently at "Camp Nana" and having fun. We're going to pick her up tomorrow. She has some play dates later this week and next week she has Dance Camp.
I'll update when I hear from Alex again. I sure would love to get a call that he's having fun and not that he wants to come home. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Tuesday, August 2, 2005 9:32 PM PDT
Wednesday
I heard from Tamah that today's camp activities included a helicopter ride. They also filmed their own commercial.
Hi Everyone -
Alex made it safely to camp. He called last night and was getting settled in. He's in the same cabin as last year and he's happy that they fixed the hole where the bugs were coming in :-) He also said that a lot of the kids he was with last year are in his cabin again. He told me he was going to call me today but he didn't. Last year he only called twice since he was busy having fun. I did get a report through Tamah from Zakkai that Alex did some photography and arts and crafts today. I'm sure he's having fun being a kid.
Most of you who know Alex know that since he's been on steroids he lives for food. He's planning the next meal before he's finished the current one. Last year at camp Alex ate matzo balls for lunch and dinner the whole time he was there so the counselors made up a song about matzo balls for him. He told me that he didn't like what they had for dinner last night so he special ordered his matzo balls. I guess the chef will be busy the next few weeks preparing Alex's favorite food!
Steve and I are so thankful for Camp Simcha. Where else can you send a kid who is on 11 medicines a day, taken 4 times a day, and who needs a shot once a week as well as daily creams? They spoil the kids rotten, but considering what Alex and his friends endure on a daily basis, they deserve it!
Don't forget there's still time to send Alex some camp mail. He doesn't return until the 16th.
Camp Simcha
430 White Road
Glen Spey, NY 12737
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!
Jill, Steve, Alex and Emily
Friday, July 29, 2005 4:22 PM PDT
Hi Everyone -
Alex is leaving for Camp Simcha on Monday and would love to get mail. He said that last year he got the most mail of all the campers and he would like a repeat performance this year! You can write to him at:
Camp Simcha
430 White Road
Glen Spey, NY 12737
Alex will be at camp for two weeks, so you have time to get something out to him. Thanks!
Alex had clinic today for Zenopax and an extra dose of IVIG before leaving for camp. His labs look pretty good and we're hoping to discontinue some meds when he returns :-) Hopefully his skin GvH will behave while he's at camp.
One of our transplant buddies is having a really hard time right now. I know they'd love it if you dropped by to offer them an encouraging word. www.caringbridge.com/va/cody They're heading back to Duke and we hope to be able to see them when we're there in August.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, July 21, 2005 4:47 PM PDT
Hi Everyone -
We headed to Lake Arrowhead last weekend and had an interesting adventure. We went to a program at the Children's Forest and since it was too hot to hike we decided to drive 5 1/2 miles up the mountain to a fire lookout. As we were driving Steve was commenting that it was pretty remote and I commented that it would be a really bad place for your car to break down. We got to the lookout and Steve's car started making some really strange noises. It wouldn't drive or reverse. When it was in park it started rolling so we had to use the emergency brake. Thankfully there were some boy scouts and their troop leaders up there just heading back down. One car went in front of us and the other car behind us. The boy scouts got out a few times to push us when we completely stopped. We made it back down to the ranger station and called AAA. The person working at the ranger station told us where to have our car towed. He then dropped us off at a place to have lunch. It was 1:30 by then. I started calling around to get a car rental but since it was Saturday everything was closed. Our new friend from the ranger station offered to drive us home. Somehow our car was fixed by the end of the day. Our problem had something to do with a CV joint being sheared off. Our neighbor took Steve back to get the car and all was well in our world again.
Alex got pretty overheated from our adventure and his skin GvH flared a bit but it seems to be back under control now. I had wet paper towels all over him at the ranger station. He was so hot that he wasn't complaining. They said it was 100 degrees in the shade. It's not normally that hot up in the mountains. Our place was really warm too and Alex ended up sleeping upstairs on the couch under the fan. I can't run the fan in the kids room because of the bunk bed. We're supposed to go up with some friends next weekend, but I'm not going unless it cools off! It's been pretty warm at the beach during the day, but at least it cools off at night.
Emily's fever finally went away and we never did have to go to the doctor. She's back to her normal active self! Emily is looking forward to Gymnastics and Dance camps next month. Today was her last day at the Child Development Center Camp and she said that she wished I had signed her up for more :-)
We're getting ready to head over to the pre-camp get together. Alex is telling us the time every minute! He's just so excited. We're going over with Tamah, Zakkai and Gavi. Steve is on a flight home now from San Jose. We'll see him later tonight. Today is our 15th Wedding Anniversary! Time sure flies when you're having fun :-)
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, July 13, 2005 9:25 PM PDT
Hi Everyone -
Check out the NEW picture added today!
We've been busy around here. Last Saturday the kids went to my mom's for a sleep over. They had a lot of fun swimming in her pool and going to the movies. On Sunday Steve and I went with some friends to the Pageant of the Masters Art Show in Laguna Beach. It was a fun outing and I told my mom I felt human getting out! I picked the kids up Monday around lunch time and when I got home Emily gave me a hug and I headed to find the thermometer. She was burning up and her temperature was 102.7 She still keeps spiking up there when the Motrin wears off. Her pediatrician said I didn't need to bring her in unless she had any symptoms, (she doesn't,) but I think I'm going to take her in tomorrow if she's still febrile. Last night Alex and I went to the Hillary Duff concert with my friend Linda and her daughter Brooke. The kids had a good time. I think the mom's needed a shirt that said "WE SURVIVED"! Actually it wasn't that bad, but I don't think I'll do it again any time soon :-) Today we had to get up early to head to clinic so we're pretty wiped out.
Alex's clinic visit went smoothly. His hemoglobin was 13.9 and we're going to give the Epogen shots for 4 more weeks and then stop and see how he does. They didn't want to make any changes before Alex goes to camp. His platelets were up to 193. His Kidney and Liver functions are still a bit high, but they think it's from the stress on his body from of all the drugs he takes daily. Alex sold 7 more of his bracelets today. He wanted to see if his old oncologist wanted to buy the last one, but when we went to find him he was asleep in his office. We checked back a few times, but he was still snoozing, so Alex decided to leave him a present. We hope he found the yellow bracelet when he woke up!
Alex is getting excited about going to camp. He wants me to pack him up now and he doesn't leave until August 1st. He had a play date on Tuesday and has one tomorrow. Next week we're going to a park outing with kids and counselors that are going to camp. Alex can't wait to see everyone.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, June 30, 2005 7:45 PM PDT
Hi Everyone -
CHECK OUT NEW PICTURES ADDED 7/01/05
Alex had his clinic visit for Zenopax yesterday. His labs look good and hemoglobin is holding at 14. We still have to give one Epogen shot a week. We saw the dermatologist and she says the folliculitis is gone, but the GvH is flaring on his face and arms. She thinks it's due to photosensitivity from some of the meds he's on. We have to be even more diligent about getting sunscreen on him.
In other news, Alex has a little summer business going thanks to Dr. K. She bought him a spool knitter when we saw her in L.A. a few weeks ago and he's been busy making bracelets and selling them for $2 each. He made $20 at the hospital yesterday and he has orders for about ten more bracelets.
Today Alex went to Vivendi Games to test a soon to be released video game for the PS2. I signed him up to be a tester about a month ago when I heard about it from a friend. I was surprised that they called so soon. They said the kids usually get called one to three times a year. They paid Alex $50 for playing video games for two hours. What could be better than that? Alex wants to open a bank account with all his earnings. He's finally decided to save some money instead of spending every penny he has!
Emily is enjoying her day camp. Today they went on a field trip to Long Beach and went on a boat ride. Then they went to a local park before heading back to school. A lot of her friends from school are in camp this summer, so she's pretty happy to be able to play with them.
We hope everyone has a safe and fun 4th of July weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, June 22, 2005 10:24 PM PDT
Hi Everyone -
SCHOOL'S OUT FOR THE SUMMER!!! Alex was thrilled to be able to go back to school for the last day today. He was dressed and ready by 7:15 :-) He had a fun time and was glad to be able to say good-bye to his friends. Emily's last day of school was at the park. I went for a little while and the kids were all having fun.
We have a few summer activities on the schedule. Alex's main activity is Camp Simcha which he can't wait to go to. I'll have to post the address there before he goes so everyone can send him mail. Last year he got more mail than any other camper! Emily is going to go to the day camp at school a couple of days a week for the month of July. She's also going to go to a week long Gymnastics Camp and a week long Dance camp in August. Both kids are going to go to Color Me Mine once a week through a program called Coach Art.
Emily finished up with her swimming lessons today. She is now a little fish. It's amazing how she went from dog paddling to swimming across the pool. I wonder when I can start her on the swim team :-)
I'll update again after next weeks clinic visit. It was really nice not going in today! Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Sunday, June 12, 2005 9:56 AM PDT
Hi everyone -
Alex had has clinic visit last Wednesday for Zenopax, IVIG and Pentamadine. The drama of the day was when his port would not draw. Three pokes and three nurses later they decided to put TPA in the line. It's a clot buster and they assumed since they could push saline in but not draw blood out that there was a clot in the line. Thankfully the TPA worked and we got on with the show. Since Alex was so brave during all the pokes, his nurse let him go to the treasure box. Normally it's reserved for kids that have a major procedure. Alex said that what he went through was a procedure!
Alex's hemoglobin was up to 14.3, so we're down to once a week on the Epogen. We decided that Alex could go 3 weeks until his next clinic visit, but then it's back to every two weeks. We had a scheduling conflict, so they said it was o.k. to wait the extra week this one time.
We had an IEP meeting for Alex last week and he's working at grade level in all subjects!!! We will continue with adaptive P.E. twice a week next year but Alex doesn't need any extra help with academics.
On Friday Emily participated in the Kinderthon. It's a fun filled day for the kinders and their 5th grade buddies. I was able to cheer Emily on while she ran for about 40 minutes. After the run, the kids got to play some fun games.
Yesterday we went to Celebrate Life Days from CHLA. It's a huge party they hold at Griffith Park every year. This year they had more things to do than last year. There are carnival type games and lots of arts and crafts. Can you guess where Emily ended up? She wanted to stop at every art table!
I've set up a few play dates for Alex for next week so he's happy. He's still hoping to be able to go back the last day of school. I haven't heard of any new cases of Pertussis, so hopefully Alex will be able to go back the last day. His teacher is going to come visit this week, so he's excited to see her. He probably won't be so excited when he figures out that she is also here to give him some tests! I've given him a few, but there are some that I don't know how to administer. I can't believe how many end of the year assessments they have. They really work right to the end of the school year here.
We're planning on heading to Duke for testing in August this year so that we don't have take Alex out of school in November. We plan to stop in Maryland for a weekend to visit with family and then head down to North Carolina where we will visit with more family :-) The only downside to this trip is that we won't be able to see Pat and Isaiah. If any of our transplant friends are reading this and will be in NC the last week of August, let us know as we'd love to see you!
We hope everyone has a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Tuesday, May 31, 2005 4:26 PM PDT
Hi Everyone -
Last Thursday was Back to School night. Steve went to Emily's classroom but unfortunately Alex was not able to attend. I had received a call late that afternoon from the district nurse telling me that there was a pertussis (whooping cough) outbreak in the Manhattan Beach Schools and that a third grader at Alex's school had it. After consulting with Dr. K, she decided it would be best for Alex not to go to school for the rest of the school year since it is very contagious and very dangerous for Alex. This didn't go over to well with Alex and he was really unhappy that he couldn't go to Open House. The district nurse set up a home teacher for Alex for the next few weeks. Thankfully Alex's teacher from last year is willing to work with him. Thank you Mrs. Miglin! Alex can't wait to see you tomorrow :-) Alex is hoping that if there aren't any new outbreaks that he can go to school for the last day. He can still see his friends as long as they're healthy so we need to set up some play dates.
We had a nice long weekend up in Arrowhead and went on a 7/10 of a mile hike one day. Alex did a great job. We also went bowling and Alex got his two high scores of 86 and 89, bumper assisted. Emily enjoyed bowling too and said she wants a bowling party for her 7th birthday. I figure she has a year to change her mind! The kids wanted to go to their favorite Mexican restaurant one night and the wait was 1 1/2 hours. We ended up walking around the village while we waited for a table. The kids said that the food was worth the wait. Emily said that it was the best she had ever had and we should thank them :-) We thought we would hit horrible traffic coming home last night but the road was practically empty and we made it home in record time.
We hope everyone had an enjoyable weekend. Have a sunny week! Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, May 25, 2005 2:06 PM PDT
Hi Everyone -
Alex had a clinic visit today for labs and Zenopax. He was done with his Zenopax at 10:30 but we had to wait until 12:00 to see the doctor. Alex had wanted to go back to school, but it just wasn't in the cards today. Alex's labs looked pretty good. His hemoglobin was up to 13.7 so the doctor decided that we could try giving Alex two shots of Epogen a week instead of three shots. Alex and I are both thrilled with this news. He doesn't like being poked and I don't like poking him! Alex goes back in two weeks.
Last weekend we had Emily's 6th birthday party. She had a cheerleading party at the park with 17 of her friends. She had a great time. I still can't believe my baby is 6. Time sure flies.
Not much else is happening here. We hope everyone has a nice Memorial Day Weekend :-)
Jill, Steve, Alex and Emily
Thursday, May 12, 2005 10:21 AM PDT
Hi Everyone -
Today Alex is 2 1/2 years post transplant so I thought it would be a fitting day to do an update :-)
Alex's clinic visit went pretty well yesterday. It was a little longer than normal since he also saw the dermatologist. We got there and he had his port accessed and labs drawn. Then he had his Pentamadine breathing treatment before heading downstairs to see the dermatologist. She feels that the underlying issue with Alex's skin is GvH, but that there are other things going on as well. She thinks that he has folliculitis which is a bacterial infection of the hair follicles that is common in immuno-suppressed people. We need to put a topical antibiotic ointment on the little red bumps and go back in a month for a re-check. The problem is that he has bumps all over his body. He also still needs two other creams for his GvH and lotion for his dry skin. I was thinking that I could combine all the creams into a spray and spray him down three times a day. I wish!!! It's a lot of work to get all the creams on multiple times during the day, but we're trying. After we left the dermatologist we went back to the day hospital for Alex's Zenopax and IVIG and to see the transplant doctor. His labs looked pretty good, but there were no med changes this week. We were hoping to be able to cut back on the Epogen but Alex's hemoglobin was only 12.5 Hopefully in two weeks it will reach the magic number of 14.
In other news, I got a call from the endocrinologist. After reviewing Alex's charts he decided he wants Alex to start on growth hormone (GH) now. Alex has not grown at all in the last 14 months. There is a question of whether the GH will work since he is still on steroids but they feel it is worth it to try. We should know if it's working after Alex has been on it for about four months. The other potential problem with it working is Alex's spine and growth plates may have been damaged from all the radiation he received. If the growth plates are damaged, GH will not work. But, we won't know until we try. We have to wait to get insurance approval to start. Hopefully it won't be as crazy as it's been with the Epogen.
This weekend we're going to a Team in Training kick off event where Alex will be the honored hero. We're looking forward to inspiring people to raise a lot of money to find a cure!
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, April 28, 2005 8:48 PM PDT
Hi Everyone -
Alex had his visit with the endocrinologist on Monday. He wants to wait six months before seeing Alex again and deciding on a course of action. Alex kept asking about the growth hormone shots and the doctor kept telling him that he hadn't mentioned them yet. Alex was somewhat relieved but knows that he will probably have to have them in the future.
After the endocrinologist we went to the BMT clinic. His doctor decided that his skin GvHD was not under control so she wants to continue with the Zenopax every other week and evaluate again in a month. I asked Dr. K about it and she said that Zenopax is a pretty mild drug compared to others used to treat chronic GvHD and that she expects Alex will need to get it every other week for another 12-18 months. This is not what we wanted to hear. So, we headed off to the Day Hospital for his infusion. Since I wasn't planning on a Day Hospital visit I didn't have Alex's berry flavored applesauce for his pre-meds. He's great about taking his many pills as long as I bury them in applesauce. It has to be berry flavored, not plain. So, I ran across the street to the grocery store and got him his applesauce. The funny thing is that he won't touch applesauce unless it's for meds.
Alex's hemoglobin was up to 11.6 this week. We're hoping to be able to back off on the shots at our next hospital visit in two weeks. Our saga with the insurance continues. When Steve went to pick up the Procrit (Blue Shield doesn't cover Epogen but it's the same thing) we realized that it had been written for the wrong strength. I asked our nurse to call it in for the correct strength and when she did I got a call from the drug store saying that it wasn't approved and that they wouldn't order the correct one until they had approval. Since we used the last dose of Epogen last night, we had visions of having to go to CHLA for a shot tomorrow. However, after many phone calls it appears that it was approved, the drug store ordered it, and it should be in tomorrow. Fingers, toes and everything else crossed!
Today Emily performed in the Three Piggy Opera with her kindergarden class. It was so cute. Emily was part of the straw house. It was lunch time for Alex so he ran over to see it too and really enjoyed it. All the dads where there with video cameras and it was standing room only.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, April 21, 2005 11:14 AM PDT
Hi Everyone -
*****Check out the new pictures *****
Medically all is going well. Alex has a lot more energy since his hemoglobin is on the rise. Our current problem is with the insurance company. Steve's division of his company was bought out and we now have new medical insurance. When Alex's BMT nurse called to get us more Epogen, it was denied. Apparently they only approve it if you're on chemotherapy. Alex's doctor at CHLA wrote an appeal and we found out today that it was approved. However, the last week has been really stressful since we didn't know if they'd approve it and we only have 3 doses left. I'm happy it's approved but wish they didn't have to put us through the ringer first. A lot of time has been spent on the phone trying to get all of this sorted out.
On a funny note, I got a call yesterday that was the wrong number. They asked if this was Toys R Us. I couldn't stop laughing since I often feel like I could open a toy store with all the *junk* my kids have accumulated. Maybe I should have told them to stop by :-)
Alex has his appointment with the Endocrinologist on Monday so I'll update again after that visit. We'll also check his hemoglobin, so think big numbers!!!
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, April 14, 2005 7:51 PM PDT
******NEW PHOTOS ADDED 4/18********
Hi Everyone -
Alex had his long clinic visit yesterday. His hemoglobin has bounced up to 10.1 with the help of the Epogen shots. We'll continue the shots until his hemoglobin reaches 14 -15 and then we will back off a little. We don't know how long Alex will need the Epogen for, we're just happy it's working. We are going to try to give the Zenopax every three weeks instead of every two weeks. We'll have to see how Alex does with this schedule. We've tried to wean the Zenopax twice before and got into trouble.
Alex has an appointment with the endocrinologist on the 25th so we'll check his hemoglobin then. I'm getting pretty good at giving the Epogen shots and Alex isn't even complaining that much anymore :-) Of course he isn't too thrilled with visiting the endocrinologist since he might need to start on growth hormone shots too.
Alex and I were able to have breakfast with Aunt Marilyn before taking her to the airport on Monday. She gave the kids some spending money for Toys R Us, so we had to go shopping as soon as I picked up Emily from her Pint Size Sports Camp that she's been doing this Spring Break week. Alex got a video game and Emily got a Fur Real pet. It's the funniest thing. It barks and licks you, etc. She just loves it. She put it to bed tonight and told me that she loves having a pet that I'm not allergic to. Thanks Aunt Marilyn for the spending money :-)
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, April 6, 2005 9:21 PM PDT
Hi Everyone -
Alex continues to amaze us with his bravery at shot time. He sits there like a pro and lets me poke him. I sure hope these shots are working since it is NOT fun. We did have to go back to the hospital last week on Monday and Wednesday for shots since home health had not delivered the Epogen. We have it now and gave the first shot at home last Friday.
Next week is Spring Break here. Emily is going to go to a Pint Size Sports Camp in the mornings and Alex wants to plan some play dates. He has his long clinic visit on Wednesday for his IVIG, Zenopax and Pentamadine. We will also get to see what his hemoglobin is doing.
I got a call today from the Leukemia and Lymphoma Society. They would like Alex to be an honored hero for the Los Angeles Westside Team in Training group. They have a couple of kick off events that they would like us to attend as well as a Pasta Dinner before the Ventura Marathon this August. I'm happy to share our story if it will help motivate people to raise money to find a cure. Alex says he can't wait for the day that no one has to go through what he's been through.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!
Jill, Steve, Alex and Emily
Monday, March 28, 2005 2:18 PM PST
Hi Everyone -
Alex went to clinic today for his Zenopax and his Epogen shot. After a lot of anxiety on my part and Alex's, I gave him the shot. It's actually quite easy. Alex's only complaint was that I needed to do it faster. I'm sure after a few more I won't fumble around as much. I didn't find it hard to put the needle in or push the medicine. What I found difficult was drawing back to make sure I wasn't in a blood vessel. I felt like I could have used an extra hand! We still don't have the medicine from home health to give at home and are hoping it comes by Wednesday. If not, I have to take Alex back to the hospital on Wednesday for his shot. We had hoped to see an increase in his hemoglobin today, but it was only 8.4 It does take time to kick in, so when we go back in a few weeks we definitely hope to see results.
Yesterday we were going to go to a Purim Party from Chai Lifeline, but Alex had to do a Creatinine clearance test where we had to collect his urine and keep it refrigerated for 24 hours. Since we didn't want to go with his jug, we skipped the party. When Alex went to the bathroom this morning, he yelled out that he was "jug free". His test came back low which means his kidney's aren't working as they should. It's not surprising. They want to wait to get the levels of his Rapamune and FK506 back before making any changes.
Emily has pink eye. It's driving me crazy that she picks up every communicable disease that's going around school She puts up a big stink about getting the eye drops. When we say it's time for the drops she starts screaming hysterically. What fun! Steve couldn't even get the drops in this morning. He said he threatened to take her beloved Barney and toss him in the garbage, but that had no effect. I'll have to try to get some drops in her eye later. It's looking better, so hopefully if we miss a few drops it won't matter.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, March 24, 2005 1:02 PM PST
Hi Everyone -
Alex went to clinic yesterday and they started the Epogen shots to help stimulate his red blood cells. The doctor that we saw this week (we have five that rotate) said she thinks his hemoglobin drop is due to the combination of Rapamune and FK506. These drugs are putting stress on his kidneys. His kidneys are not telling his bone marrow to pump out red cells. The Epogen doesn't work overnight. I don't know how long he will need it for, but it's given three times a week. Alex isn't too happy since the shots sting. We're not too happy since we have to learn to give them to him. Both Rapamune and FK506 are immune suppressants and you can't just stop taking them because the GvH will rear it's ugly head. Since Alex isn't the only one having trouble with this combination of drugs, they're trying to figure out what to do. We have to go back tomorrow for shot #2 and Monday for shot #3. We hope by then to have home health set up to deliver the shots so we can give it at home.
Last week Alex was star of the week in school. He got to take in some special things to share with his class and one of them was his Songs of Love tape. He said his friends loved it. Alex got to sit in a special chair all week and he got to pick a friend to go to lunch five minutes early every day.
Last week Emily had a great time at Community Day. She set up her little beauty shop and polished girls and boys nails. Their 5th grade buddies came to visit and she said she even polished some of the 5th grade boys nails with pink and purple polish! On Tuesday I took Emily to see Ice Princess with a friend and we went to the party with the Princesses afterwards. They had ice skating, a bouncer, and best of all a beauty parlor where Emily got her hair done. I'll try to have Steve post some pictures this weekend. It was fun having a girls outing. Emily has really gotten the short end of the stick with Alex's illness so it was nice to have some quality time with her.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, March 16, 2005 10:13 PM PST
Hi Everyone -
It's time for my long awaited update :-) Alex went to clinic last Wednesday and his hemoglobin was about the same at 8.5 We started him on iron pills once a day while we were waiting for some other levels to come back. He had clinic today for IVIG, Zenopax and Pentamadine. His hemoglobin is down to 8.1 and they like to transfuse if it's under 8.0 We're going to wait until Alex's next clinic visit in two weeks to decide what to do. Our options are transfusing him or starting him on Epogen shots at home one to three times a week. They think that might help since his Erythropoietin level is low. Alex says he feels o.k. and he even went to Physical Therapy for the first time in a few months yesterday. The doctors have said that when your hemoglobin drops slowly the body compensates so you don't feel as bad. They still have no clue why Alex's hemoglobin has dropped and I want answers!!!
This Friday is my birthday and my mom is going to watch the kids so Steve and I can get away for the weekend. Unfortunately we're missing a few school activities on Friday. Emily's class is having a community day where everyone in the class has a community job such as fireman, policeman, teacher, etc. Emily is going to be the beautician/make-up artist. She choose this job. She's getting all her supplies together to "beautify" her friends. I hope someone takes some pictures. Alex's class is going to an awards assembly.
Our friend Cody can use a few extra prayers/good thoughts sent his way. He's in the hospital and has lost 9 pounds and all his tests have come back negative so the doctors don't know what's causing the problems. www.caringbridge.com/va/cody
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!
Jill, Steve, Alex and Emily
Sunday, March 6, 2005 10:39 PM PST
**************NEW PICTURES*************
Hi Everyone -
A lot has been going on here. Last Wednesday Emily came home with really red cheeks and the school nurse thought she had Fifths Disease, a common childhood illness where you look like someone has slapped your cheeks. I took her to the doctor on Thursday and she said that she could not definitively say that Emily had Fifths because she did not have the body rash that went with it. I looked at some pictures on the internet and they looked exactly like Emily so I'm pretty convinced that she had it. Once you have the red cheeks you are no longer contagious so Emily didn't miss any school.
Fifths Disease is a problem for the immune comprised. After calls to Alex's doctors we decided to take the wait and see approach. We're hoping that he's protected by his IVIG that he gets monthly. CHLA said they would give an extra dose but only if Emily's doctor said it was definitely Fifths. There is also a National shortage of IVIG and this is a drug that Alex needs every month. CHLA does have a generic form of it, but it's not a good practice to switch brands because you can have a severe allergic reaction. Alex is already on his second brand because brand #1 is no longer being manufactured.
Alex is still not feeling right. He told me tonight that we need to figure out what's wrong with him. They got the iron studies back and he is border-line low. They want to run a few more tests before they would start an iron supplement. They told us it's o.k. to wait until the 16th to do the tests but Alex wants to go in this week and have them done so that they can figure out why he feels so bad. Since we're penciled in on Wednesday for a blood transfusion we might go in then.
My friend Tamah (Zakkai's mom) and her 16 year old son Arik ran the L.A. Marathon today for Team in Training. Arik raised over $10,000 for the Leukemia and Lymphoma society and was the top fundraiser for Southern California Team in Training. We're really proud of both of you. WAY TO GO!!!!
We hope everyone had a good weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, March 2, 2005 8:58 PM PST
Hi Everyone-
I think I'll start with the fun stuff first. Alex had a great time at his birthday party with all his friends. He even bowled a spare with the help of bumpers. He was just so thrilled to have all his friends there to help him celebrate his big day. Emily didn't bowl. When we asked her why she told us the weights (bowling ball) were too heavy.
Alex and Emily both went to friends birthday parties on Saturday and had a good time. Alex did fall out of the bouncer and got a few scrapes so he was a little upset until my friend told him that it was so great that he was a normal kid with ouchies. Emily enjoyed the golf party she went to so much that she wants to have her birthday party there :-)
On the medical front, Alex's hemoglobin has dropped to 8.4 (normal is 11.5 and up) and the doctors are fairly baffled. They don't think it's GvHD. They did an iron test to see if he's iron deficient but the results won't be back for a few days. I'm hoping that the test gives us some answers but I'm not holding my breath. Platelets were great at 225 and everything else looks pretty good. As long as Alex feels o.k. we'll go back to clinic in two weeks. They penciled him in for a blood transfusion next week but since his hemoglobin has been dropping by 1/2 a point every two weeks for the last few months I think he will be o.k. for the next few weeks. His main complaint is that he's tired.
I'll try to have Steve put up some birthday pictures soon. I'd do it but I'm technologically impaired!
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Sometime between Monday February 28 and Tuesday March 1
!!!HAPPY 9TH BIRTHDAY ALEX!!!
Alex had a great time at his party on Sunday. I'll update with more details after his clinic visit on Wednesday.
Thursday February 24, 2005
Hi Everyone -
Alex, Emily and I are healthy. Steve has been out of town on business and he said he has a cold but he thinks he was getting it before he left. Let's hope it's the same thing we all had so it doesn't go around the house again. We thought Alex was sick last Sunday since his nose ran all day. He was fine on Monday. It was pretty strange, but since he feels o.k., I'm happy!
Tuesday night I was up half the night with Emily. She keep crying that her leg hurt. Of course she was screaming for Daddy who wasn't here. I'm not sure what the problem was, but she hasn't mentioned it since. I've lost a little sleep over this incident and I'm sure all you cancer moms out there can relate!
Alex is getting excited about his birthday party on Sunday. This is a huge deal for him since he hasn't been able to have a party with lots of friends since his 5th birthday and he will be 9. I think I might be crazy to have 15 kids, but the chaos will only last for two hours and I don't have to do the clean up since it's at the bowling alley.
I can't believe it's almost March. Where have January and February gone??? We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, February 16, 2005 3:16 PM PST
Hi Everyone -
I have a really nasty cold, so Steve had to take Alex to clinic today. Alex's hemoglobin was down to 8.8 but his reticulocyte count was high which means he's making red blood cells. Hopefully when we go back in two weeks things will be back to normal. He's still complaining he's tired, but now we know the reason. The low end of normal for hemoglobin is 11.5 His platelets were 235 and the rest of his labs looked good.
Friday is the 100th day of school and they will be doing all sorts of fun things. Emily wakes up everyday and asks if it's Friday. The kids both had a fun Valentines Day in their classrooms and came home with a lot of cards and candy.
We had a nice trip to the mountains, but it rained a lot while we were there. We never did get to build our snowman, so that will have to wait for another trip.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!
Jill, Steve, Alex and Emily
Thursday, February 10, 2005 10:16 PM PST
Hi Everyone -
Quick update. Alex had been complaining he didn't feel well last weekend. He was pretty tired and pale. Since his hemoglobin was only 9.3 at the last clinic visit we were concerned. He also started to complain that his ears hurt. I took him in to clinic on Wednesday and they said his ears were fine, his color looked good and to go home. They wouldn't even draw labs. We go back next Wednesday for IVIG, Zenopax and Pentamadine.
We're heading up to the mountains since the kids don't have school on Friday. It's raining right now so we hope to get up the mountain without having to put chains on. Hopefully the rain will stop by morning and driving conditions won't be too bad. We charged the DVD player so the kids can watch it in the car. Babs, the DVD got here just in time for the trip. Thanks! Emily is enjoying all the hair clips you sent too. I think she had all of them in her hair at one point tonight. I should have taken a picture but the camera was packed. Check back for new pictures sometime next week :-)
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, February 2, 2005 8:57 PM PST
Hi Everyone -
Alex had his clinic visit today for his Zenopax. His labs all looked good with the exception of his hemoglobin which was 9.3 It's dropped over the last month from 11.2 They're attributing this drop to Alex's cold, and I'm hoping that's all it is. Platelets were 187!
The results of Alex's growth hormone testing are in and he's going to need to start getting growth hormone shots. Since Endocrinology has a 2-4 month wait for an appointment I told Alex not to get too stressed about it now. He also isn't producing any testosterone so he will need shots for that as well. if I understand it correctly, he will get those after he grows. Because we hope to start the shots sometime soon they want to get Alex off of steroids. The plan is to wean the current dose of 5 mg a day to 10 mg every other day. Then they'll wean that if all stays stable.
The drama for this week was the loss of tooth #2 for Emily. She absolutely freaks out over the sight of blood so when her tooth was bleeding and hanging on by a thread she was screaming her head off. You would have thought she was being tortured. For some reason she says she needs a gogurt to get the tooth to come out. I gave it to her and out popped the tooth. She was so excited that the tooth fairy left her two dollars :-)
Speaking of teeth, Alex has to have a cavity filled. Because of the risk of infection due to having a port, he needs a HUGE dose of antibiotics before and after the procedure. I still need to set up the appointment.
Uncle Mike is coming to visit this weekend. The kids are really excited. He's the Uncle that tends to get on the floor and wrestle with them and they love it! I'm also going to a baby shower for Alex's teacher this weekend. She's looking very pregnant and I don't think she plans to be in school that much longer. I heard that the long term sub that is taking her place is wonderful. I'm not looking forward to the change, but it's nice to hear good things about the new teacher.
We hope everyone is having a sunny week. It's in the 70's here! Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!
Jill, Steve, Alex and Emily
Friday, January 28, 2005 12:03 PM PST
Hi Everyone -
Alex came down with a cold Wednesday night and is feeling pretty crummy. He didn't go to school on Thursday so I wasn't able to volunteer in Emily's class. I felt really bad since I wasn't able to volunteer in her class the last time I was scheduled either. Today there is no school which was really nice since we woke up to rain. We stayed in our PJ's all morning!
Steve has been out of town the last few days and will be home tonight. Emily came into my room crying and screaming at 6:30 a.m. Wednesday morning because Daddy was gone. I was in a deep sleep and thought I was going to have a heart attack! What a way to start the day.
My friend Debbie brought by the tape from Extreme Home Makeover and I bawled through the whole thing. Thanks to all who offered to send me the tape :-)
We hope everyone has a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill
Sunday, January 23, 2005 9:41 PM PST
Hi Everyone -
We've had a pretty eventful couple of days. Last week Emily decided to make a play date for herself and not tell me. Her friend's mom called me about ten minutes after school was out to ask if it was o.k. Emily was supposed to go to the Child Development Center (she goes on Tuesday and Wednesday afternoons) but they left without her since she told them she had a play date. Emily had a fun time over at her friends house but we discussed that she needs to clear her play dates with me first!!!
Emily had been complaining that her ear was bothering her so I took her to the doctor Thursday and she did have an ear infection. Her lungs were clear, but she was up a couple of nights last week coughing. She coughed so hard one night that she vomited. I called her pediatrician Friday and she told me to go ahead and give her the cough medicine with codine so she would get some sleep and stop coughing all night. I actually had to take the same cough medicine one night last week too. I'm on the mend, but Emily still sounds horrible and doesn't feel great.
So far Alex has escaped the dreaded cold. He had a play date at one of his friends from school on Friday and had a great time. I'm so glad he's making some new friends. The verdict is in...it's going to be a bowling party. He's already making a wish list :-)
This week I'm volunteering in Alex's class on Tuesday and Emily's on Thursday. They both love it when I help out in their classroom. Alex's class is doing a Young at Art project with acrylic paints. Since Emily missed out on her Young at Art class when she didn't go to school last Thursday, she can make it up by going to Alex's class. It's going to be a busy week here.
If anyone happens to have a tape of tonight's Extreme Home Makeover that I can borrow, please let me know. A family from Duke (we didn't know them) was featured.
We hope everyone has sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, January 19, 2005 7:33 PM PST
Hi Everyone -
I got Emily's cold and feel like I've been hit by a ton of bricks so Steve took the day off to take Alex to clinic. Alex's labs looked pretty good and there are no med changes this week! Blood pressure is under control too. They drew labs for immune functions this week. The results should give us an idea of where Alex's immune system is functioning. Steve said it was a pretty uneventful clinic visit.
The decision of the week for Alex is where he's going to have his birthday party and who he is going to invite. He has to make a decision soon since things get pretty booked up around here. Right now he's trying to decide between mini-golf and bowling but I think he's leaning towards bowling. I'll let you know when the verdict is in. Alex is really excited to have a birthday party with a lot of friends. The last few years he was so immuno-suppressed that we had to have his party at home with family and a friend or two. I'm excited that Alex is going to have a party somewhere else so I don't have to do the clean up! Actually, I'm just happy that Alex is looking forward to a normal kid activity :-)
I wasn't going to mention it since I know half of the country is frozen right now, but it's been 85 degrees here the last few days. It's been absolutely gorgeous but I hate having a summer cold in the winter. We'll have to see if our beach weather holds for the weekend.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!
Jill, Steve, Alex and Emily
Saturday , January 15, 2005 6:18 PM PST
We had a change of plans due to mother nature. All the roads to Lake Arrowhead are closed due to mud and rock slides from all the rain. We're bummed, but rescheduled our trip for next month. So, we're going to continue our organizational efforts at home and find a few fun things to do.
Today Alex went to the gym to walk on the treadmill and then he and Steve went to see a movie. Emily has a cold, so I don't know what fun things we'll come up with for her to do. She is plastered to the couch watching TV and doesn't have a lot of energy. Hopefully she won't share her germs with the rest of us!
Tuesday, January 11, 2005
Thanks for all the New Year's Greetings in the guestbook. Alex was having fun reading them all and Emily was trying to sound out the letters she knows the sounds of :-)
A few people have asked if we've floated away but we're still here. We thought we were going to need oars to leave the house the other day! We can't ever remember seeing this much rain in Southern California. We were very happy to see sunshine today. Emily was thrilled to be able to play outside at school but Alex prefers rainy days and playing inside with his friends. I was just happy not to get soaked taking the kids into school!
We got a blood pressure machine to check Alex's blood pressure at home. The other day it was pretty good but when Steve did it tonight it was high. The doctors did tell me that they will most likely have to increase the dose of his medicine next week so it's not too surprising that it's not normal. Alex's skin is looking pretty good except for a few hot spots. It seems that we get one area under control and another area flares up. It's pretty frustrating.
My back has been bothering me so my mom took Alex to physical therapy today while I rested. She also made lunch and dinner. Thanks Mom! I'm not sure what I did to my back but I could barely stand up the other day. It seems much better tonight and I'm hoping it's even better tomorrow. I think I'm getting old!
With all the rain we've had, the local mountains got a bit of snow so we're going to go play in the snow this weekend. Emily wanted to try to ski, but then decided it's too scary so we'll stick to sleds and saucers. Steve was outside last weekend during an hour rain break trying to put chains on the car. Apparently he still remembers how but hopefully the roads will be clear and we won't need them :-)
We hope everyone is having a SUNNY week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, January 5, 2005 9:15 PM PST
Hi Everyone-
Alex had his clinic appointment today and his blood pressure was sky high so they started him on blood pressure medicine while we were there. He has to take this medicine three times a day. He already takes so many pills that it didn't even phase him to be told he needed another. It sure phased me, I'm not too happy with the situation! Other than that, clinic was pretty uneventful. Alex got his Zenopax and his labs were o.k. His liver and kidney functions are a little on the high side and his platelets dropped a bit to 138. His magnesium was borderline low but stable. I think everything started to go haywire with the addition of the Sirolimus mid-November. Dr. K told me that if it was helping his skin that it is worth it. I'll try to hold onto that thought for now.
Alex was going to try to go back to school today after clinic but he fell asleep from the Benadryl. He said he had a great day yesterday and was happy to be back at school with his friends. Emily was happy to be back in school too.
Next week the kids are starting a Ceramics/Art class through Coach Art. It's a program for kids being treated for various illnesses and their siblings. It's at a place called Color Me Mine. They will go once a week for 10 weeks and they get to each paint a piece of pottery and then it's fired and ready for pick up the following week. They're both looking forward to it. I'm just wondering where I'm going to put all of their creations :-)
Alex's next appointment in two weeks is for his triple whammy as I call it...Zenopax, IVIG and Pentamadine. Hopefully we have a smooth ride until then. We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!
Jill, Steve, Alex and Emily
Saturday, January 1, 2005 9:08 AM PST
Happy New Year! I can't believe it's 2005, it seems like it was just 2000. We didn't do to much last night, but our friends Doug and Deborah who we've celebrated New Year's with for the last 12 years will be coming over later today.
Grandma came in on Wednesday and stayed with the kids while Steve and I went to San Diego on Thursday and Friday. We went to see CAL play in the Holiday Bowl. They were favored to win, but I think they had too much fun in San Diego and not enough practice time since Texas Tech walked all over them. We went with Richard and Kim and it was fun.
The kids are both looking forward to going back to school next week. They go back on Tuesday. Emily has been asking for over a week when she gets to go back to school. I'm glad they both like it!
Alex has a clinic visit on Wednesday. His GvH rash has flared a bit so we're trying to battle it down with creams. He's also still having a little bit of a problem from all of the magnesium he's been taking. Other than that he's feeling pretty good.
We hope everyone has a HEALTHY and Happy New Year. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!
Jill, Steve, Alex and Emily
Saturday, December 25, 2004 10:45 AM PST
Hi Everyone -
*******NEW PICTURES*************
Alex had his clinic visit on Wednesday. His blood pressure is a little high so we have to put him back on a low salt diet for a few weeks. If that doesn't help he will need blood pressure medicine. We really hope we don't have to add another medicine to the pile of pills he already takes. His skin GvH is still looking good and he seems to have a lot of energy. He's had physical therapy twice this week and has done a great job.
We dropped the kids Friday at Nana's for the weekend. They were so excited. All they're talking about is what a good cook Nana is. From the way they're talking you'd think that we never fed them! Steve and I are going to try to organize some things around the house and just enjoy each other's company while they're gone. I really want to start out 2005 organized.
Tomorrow (Sunday) we're heading over to Doug and Deborah's house which we haven't been to since before Emily was born. They always come over here since they have hound doggies and Alex is terrified of them. We can't wait to see all the changes you guys have made and of course to see those doggies!
We hope everyone has a nice holiday weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!
Jill, Steve, Alex and Emily
Monday, December 20, 2004 8:30 PM PST
Hi Everyone -
WE ARE HOME!!! We had a fun vacation but are happy to be home. We all agreed that it would have been nicer had the weather cooperated, but we still enjoyed our escape from reality. Alex commented that this is the first "real" vacation he's had in two years. I asked why it was "real" and he said, "no doctor visits or tests". Hmmm.....I always try to bill our trips to Duke as a mini vacation but I guess he doesn't see them that way. This was the first week in about 2 months that Alex didn't have to go to the clinic!
On Friday morning the kids and I wandered around the resort while Steve was on a conference call from work. In the afternoon we headed over to Sea World. We saw the dolphins from an underwater viewing area and the kids really liked that. Then we headed over to the Shamu show. It was a really good night time show. After the show we wound our way out of Sea World and went back to our villa and made some dinner. It's nice to have a kitchen so we didn't have to eat all of our meals out.
On Saturday we met up with my friend Annie, her husband Lex and their daughter Isabelle. Emily and Isabelle had fun playing together. We went in the pool for a few minutes and then migrated to the jacuzzi. It was close to 70 degrees and the warmest day we had in Florida. After swimming, we went back and visited for awhile and headed out for dinner. After dinner we headed over to meet up with Dr. K who was in town for a conference. She thought Alex's skin looked much better. She saw him at the beginning of November when his skin GvH was totally out of control. She said it's not uncommon for the GvH to go through cycles of good and bad. We're of course hoping that it stays good!
On Sunday morning we hung out with our friends, had lunch and then they headed out since they had a two hour drive home. We rested a little and then braved the mall to go to Build A Bear and California Pizza Kitchen for dinner. It wasn't as crowded as I thought it would be. Emily had Bear Bucks and made a pig and a unicorn. Alex made a small bear and got it some roller skates. CPK was good as always. After dinner we headed back to pack up all of our stuff. I can't believe how many bags we had.
This morning we met up with the Bennetts for a few minutes at Downtown Disney before heading to the airport. It was 42 degrees out and we were all freezing. We made it to the airport a little behind schedule (according to Steve), but we returned our rental car, checked our luggage and made it through security in record time. We were at the back of the plane but had two rows for the four of us, so we spread out a bit. It was a loooooooong flight but at least it was non-stop.
We hope everyone is enjoying the holiday season. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!
Jill, Steve, Alex and Emily
Thursday, December 16, 2004 11:13 PM EST
Hi Everyone -
Yesterday we headed out to Sea World. It's a two minute drive from the resort we're staying at. Since we're still not quite on Eastern time we got there around 11 a.m. which was fine since it was FREEZING! We were all bundled up and I was wearing one of my scarves. I bought Emily some gloves since her hands were so cold. Steve wants a t-shirt that says "Central Florida Ski Club". We want to know where the snow is. I think the high yesterday was 54 degrees. BRRRRRRRRRRRRR!!!!!!!!!!! The first thing we did once we got in the park was head to Shamu Stadium for the Shamu show. It's always fun to watch the unsuspecting folks in the "soak zone" get soaking wet. Of course we love watching all of the whales too. We were bummed since Dolphin stadium is closed until May for refurbishment. We did see a new show called Odyssea. It's a circus act and we all enjoyed it. We also saw the sharks, penguins, beluga whales, polar bears and the walrus. After about four hours Alex was getting tired of walking so we headed back to our villa and watched The Princess Diaries 2. Emily's artwork included tiaras today :-)
Today we hit another outlet center for about an hour. I was in search of some long pants for me and Emily since I only packed two pairs thinking it was going to be warmer here. We lucked out and found some at the Gap outlet. The kids also spent some of their Chanukkah money at the KB toy outlet. We headed back for lunch and a little rest before heading out for our afternoon and evening plans. We went to Downtown Disney and had ice cream at the Ghiradelli Chocolate Factory. The kids spent some more money at Disney and the Lego store. At the Disney store they had a My Little Pony station where you could stuff as much as you could into a tiny box for $18. Steve and Alex thought it was hilarious how we stuffed this tiny box full of stuff. l was also looking for some Disney trading pins for my friend Debbie's kids and my kids decided that they wanted to collect them too. So we spent a little time in the Pin Trading Store. Then we headed off to dinner. After dinner we went over to Give Kids the World and met up with our friends the Bowmans. We went on a horse drawn carriage ride, played mini golf, went on the train and carousel, saw snow (man made) and had MORE ice cream. We went back to the Bowman's villa and were getting ready to say goodnite when Mrs. Clayton, Mayor Clayton's wife stopped by to tuck Andrew into bed. Mr. and Mrs. Clayton are bunnies that rule GKTW. I video taped the Claytons tucking Andrew into bed for them. He was so excited. I told Simon to pretend he wanted to be tucked in too. It was really cute. Emily hugged them and Alex gave them high fives. Of course I forgot my camera so no pictures :-( Ellen, Brian, Simon and Andrew, it was great getting to spend a few hours with you. We hope you enjoyed it as much as we did!
Tomorrow we plan to go back to Sea World in the afternoon/evening. They have a special night time Shamu show that the kids want to see and we didn't get a chance to see the Sea Lion and Otter show. Since we bought our tickets from our resort we got 5 days for the price of one day. Since it's actually supposed to warm up tomorrow, we thought we might go swimming in the morning. Think hot, hot, hot for us.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!
From Orlando,
Jill, Steve, Alex and Emily
Tuesday, December 14, 2004 10:23 PM EST
Hi Everyone -
We made it to Florida in one piece! The flight was pretty uneventful and it was an easy drive from the airport to our timeshare. The place is really nice and has a jacuzzi tub in the master bath that the kids just had to take a bath in. The pool area looks really nice too, but it's freezing here (o.k., not really by most people's standards) and the high today was only 58 degrees. I decided I much prefer this though than the hot, humid and buggy weather they have here most of the year.
Today started out slowly due to jet lag. We explored the resort and then had a little lunch and hit the outlets for an hour. We just had to run into the Disney outlet :-) Then we headed over to Give Kids the World and played there for a few hours. We were able to ride the train and carousel and play a little mini golf. Emily also found every little car that moved up and down. Remember those quarter rides outside of grocery stores? At GKTW, you don't need quarters, you just push the button. The kids also had fun in the arcade and Alex liked the the remote control boats. And, last but not least, we enjoyed a trip to the Ice Cream Palace.
Alex wanted Mexican food for dinner, but we were having a hard time finding Mexican food nearby. We finally decided on the Cracker Barrel since we don't have those in California. We drove around in circles for awhile and finally found it. We did find a quicker route back. All the roads here have about four names or numbers which makes things really confusing!
Tomorrow we're planning on spending the day at Sea World. We might have to buy some sweatshirts or better yet a blanket to keep warm at all the shows. Or maybe we can all just huddle together. Anyway, we are looking forward to seeing Shamu and Dolly Dolphin.
We hope everyone is having a WARM, sunny week. Thanks for checking in on us and don't forget to sign the guestbook.
From Orlando,
Jill, Steve, Alex and Emily
Sunday, December 12, 2004 9:50 PM PST
Hi Everyone -
We're getting ready to fly out to Florida. I think we've packed everything but the kitchen sink!!! It turns out that some of our Duke friends are going to be in Orlando next week so we're going to hook up with them. Alex really hit it off with Andrew's brother Simon while Andrew was at Duke for complications. You can check up on Andrew at www.caringbridge.com/page/andrewshope The Bennetts have three children with Sanfilippo. Their youngest son Tommy had his first transplant when Alex had his. Sadly, Tommy became an angel a little over a year ago. You can check in on the Bennetts at www.caringbridge.com/ca/bennettboys We're also going to see my friend Annie and her daughter Isabelle from my ALL-Kids list from way back when who live in Florida. We've tried to get together twice before and it didn't work out, so hopefully the third time is the charm.
Yesterday we missed the Camp Ronald McDonald holiday party since Alex did a flip off his bed. He was goofing around, trying to get out of having his creams put on and when he went to sit up his hands missed the bed, he went down head first, getting a nice goose egg on his forehead and then his body followed and he did a nice flip, landing on his back. Thankfully he didn't break anything. We just got his bone density tests back and he is 5 standard deviations below normal so he is at a very high risk for breaking bones. We headed out to Nana's a little earlier than planned instead and the kids had fun there. They got way too much stuff from Nana and Uncle Steve and Aunt Janet for Chanukkah.
I'm not sure if I'll update while we're gone or not. Sometimes I like to journal and using this site is an easy way to do it. We'll see if I'm in the mood?!?
We hope everyone has a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!
Jill, Steve, Alex and Emily
Wednesday, December 8, 2004 9:23 PM PST
Hi Everyone -
Alex had his weekly clinic visit today. His platelets were 168 and hemoglobin was 11.5 His liver functions doubled again this week. The doctor said it could be from the skin GvH, his virus, the addition of the sirolimus or liver GvH. We certainly hope it's not liver GvH. My guess would be the sirolimus since his liver functions started to go up when we added it. His magnesium is still borderline low so we'll have to watch it. Since we're going to Florida next week, we'll deal with some of these issues when we return.
We were out of clinic fairly early, so Alex went back to school this afternoon. I told them at clinic that I wanted him seen by the doctor as early as possible so that he could go back to school. When the doctor came in Alex was snoring! She took one look at him, started laughing and said there was no way he was going back to school. He was just taking a nap compliments of Benadryl, and was fine when he got up. I think he might have liked a longer snooze, but he was o.k.
HAPPY HANUKKAH to everyone who celebrates. The kids are having a fun time lighting the menorah and opening presents. A huge thank you to special assignment Hanukkah chemo angels Debby, Jodi and Sue for the boxes of presents they sent. We're having a Chanukah celebration at Nana's on Saturday night with Uncle Steve and Aunt Janet. Laurie, we wish you, Nic, Josiah and your Mom and Dad could be there too! On Saturday, we're also going to the Camp Ronald McDonald Holiday Party at the Warner Brother's Studio Ranch. We should have a fun filled day. That leaves Sunday for packing and then it's off to Florida!
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!
Jill, Steve, Alex and Emily
Sunday, December 5, 2004 6:54 PM PST
Hi Everyone -
We've had a crazy weekend. On Saturday we went to CHLA for picture day. An organization called Holden's Hope Train was doing family pictures for families of children with cancer. I'll try to see if Steve can get them up soon. After that we decided to go for Dim Sum in China Town, but they had already stopped serving .We decided to get take out from their "to go" shop. Big mistake. Steve got food poisoning. Luckily Alex and I were o.k. Definitely scary!
When we got home from our Saturday outing I was cleaning up and found a note that had been sent home with Emily saying that Hand, Foot and Mouth disease was going around Emily's class. This freaked me out since it's a pretty nasty virus. I don't want either of the kids to get it since the count down is on for our trip to Florida. Hopefully all of us will be healthy so we can have a fun, relaxing vacation. We really need it!
Today was a nice, relaxing rainy day. Keri (Alex's Kindergarten teacher) came over for a visit and played games with the kids all afternoon. Thanks for coming over Keri, it's always great to see you. Alex and Emily say thanks for the candy and spending money for Florida :-)
Today we were anxiously awaiting the Bowl bids for College Football. It had looked like CAL was going to go to the Rose Bowl for the first time since 1949 but they were robbed and will be going to the Holiday Bowl in San Diego. We decided to go to the game and are going to go with Steve's brother Richard and wife Kim. Hopefully my mom will be able to watch the kids for a few days.
Alex is still battling his cold. He says that his tummy problems are bothering him more than his cold. His tummy is a little better today. We've been splitting the magnesium dose and giving it twice a day. The only problem is that it has to be given 2 hours before or after the Cipro. It's hard to get everything in! On weekends, it's not a problem, but I'm going to have to go to school to give it to him this week. After vacation, I guess we'll have to figure out a better plan.
We hope everyone has a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!
Jill, Steve, Alex and Emily
Wednesday, December 1, 2004 10:10 PM PST
************NEW PICTURES ADDED 11/30**************
Hi Everyone -
Alex had a pretty uneventful clinic visit today and he goes back in a week. His cold is a little better and I think he will be able to go back to school tomorrow. His nurse today knows one of our on-line friends from Milwaukee. How cool is that? She's a traveling nurse and today was her first day at CHLA so she was being shadowed by a nurse that has been there longer than us! She was great and Alex hopes he gets her again.
Alex's magnesium was up a little today so he didn't have to get an IV infusion of it. He is having a bit of a problem with the higher oral dose since Magnesium is a laxative. You get the picture. Hopefully his body will adapt to the higher dose.
I have to mention that there was frost on my windshield this morning. It actually feels like winter here and the high has only been around 60 degrees. For a lot of you that might not seem cold, but to this native Californian, 60 degrees is FREEZING. I admit I'm a wimp! I want my nice balmy 70 degree winter days :-)
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!
Jill, Steve, Alex and Emily
Monday, November 29, 2004 11:02 PM CST
NEW PICTURES ADDED 11/30/04
Hi Everyone -
We made it to San Diego on Thursday. It took 2 1/2 hours due to traffic. Uncle Richard made an incredible dinner. I don't know how long he was working in the kitchen before we got there, but he was in there for 4 hours after we got there without a break. We had a nice time visiting with everyone. Emily came down with the cold on Friday and is pretty much over it. Alex got it yesterday and is feeling pretty bad. Steve is still sniveling and I'm still trying to fight it off! I heard that Grandma and Uncle Richard now think they're getting it. I decided that Steve isn't happy unless he can share :-) Aunt Marilyn came for a quick visit yesterday and maybe she should have worn a mask.
The exciting news here is that Emily has lost her first tooth. Emily has been showing everyone the hole in her mouth. Her permanent tooth actually is all the way in and was behind the baby tooth. We thought we were going to have to have the baby tooth pulled, so we're happy it decided to come out on it's own.
Alex went in today for his Growth Hormone testing and repeat labs. They weren't sure if they should go ahead with it since he wasn't feeling well and left the decision up to him. He decided he just wanted to get it over with. They took a lot of blood and he couldn't eat until about 1:30 p.m., so he was feeling pretty nauseated on top of feeling bad from his cold. His labs all looked good except for his Magnesium which was low. I'm hoping we can keep his level up with oral magnesium. They told us that if he can't keep it up he will need weekly IV magnesium. Two of his anti-rejection meds make him leech magnesium. We go back to clinic on Wednesday for IVIG, Zenopax and Pentamadine. I ran into one of Alex's nurses today in the cafeteria and told her that I don't want a traveling nurse on Wednesday. Unfortunately it's her day off, but she said she'd give them my request.
We hope everyone's week is off to a good start. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, November 24, 2004 9:31 PM PST
Hi Everyone -
The last update was short since Steve was in Washington D.C. and I was winging it here. So, here's what's been happening...
Last weekend we had some fun. We were able to meet with some on-line friends whose daughter Kendrie also has ALL. You can check in on Kendrie at www.caringbridge.com/ga/kendrie I always love to read her site since her mom Kristie really has a way with words. We went to the tide pools in San Pedro and saw some interesting creatures. Kristie, it was great to meet you and your gang in person. We hope you're having a fun vacation!
After our visit to the tide pools we headed over to Zakkai's for his NO MORE CHEMO party. Boy did they have a crowd. Congratulations to Zakkai and his whole family for reaching the OT milestone.
Today Alex had a clinic visit to see the doctor and get his IV Zenopax. We had a traveling nurse who refused to waste some blood when drawing labs thus messing up Alex's labs. For those of you non-medical or non-cancer types, you have to draw the saline and heprin out of the line so that the blood sample is not diluted. When I told Alex's BMT nurse what had happened, she said I shed some light on why some other patients labs had come back all messed up too. She marched down to the Day Hospital to have a chat with the nurse. I'm glad I wasn't the one on her warpath! What this means for Alex is that he will have labs re-drawn on Monday when he goes in for his Growth Hormone Testing. He also has a clinic visit on Wednesday for his "triple whammy"...IVIG, Pentamadine and Zenopax.
I was already frustrated before I got to clinic today since I was planning on going to Emily's Thanksgiving feast at school. The Kindergardeners cooked everyday last week so they could have a feast with their 5th grade buddies. I had told Emily I was going to go. She was so upset that Daddy is sick and couldn't take Alex to clinic. I felt so guilty. Steve went to the feast, but Emily really wanted Mommy. She went to the Child Development Center after school today and when Steve went to pick her up she didn't want to go home since they were having hot chocolate and pumpkin pie. She had already had ice cream. Apparently Emily also had pie at her feast. When I asked her if she knew what she was having for dessert tonight she asks, "pumpkin pie?" I think the junk food junkie is having fruit tonight!!!
As for Steve, every time he gets on a plane he gets sick. If anyone has any suggestions on how he can stay healthy while flying, I'm all ears. I just hope he doesn't pass his germs on to the rest of us!
We're heading down to San Diego for Thanksgiving tomorrow to feast with Uncle Richard, Aunt Kim, Grandma and Uncle Mike. I made a cornbread and two pumpkin pies today to take to the feast.
We're so very thankful for all of our wonderful family, friends, and doctors who have stood beside us on our roller coaster ride. We couldn't have survived this journey without all of you! We hope everyone has a wonderful holiday. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, November 17, 2004 10:28 AM PST
Hi Everyone -
Just a quick update to let you know that Alex's clinic visit was uneventful and we were even home by noon! Alex's platelets were 199! They did an antibody test while we were at Duke and Alex is no longer making antibodies to destroy his platelets. His biggest problem continues to be his skin GvH. He looks a lot better than a week ago, but still has some "hot" spots. Alex got his Zenopax today and he will get it again next Wednesday.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!
Jill, Steve, Alex and Emily
Friday, November 12, 2004 7:34 PM PST
HAPPY RE-BIRTHDAY ALEX!!!
Today is 2 years since Alex's transplant. It's certainly been a roller coaster ride. Tonight we celebrated by going out to CPK or California Pizza Kitchen for those of you who don't know the lingo. CPK is Alex's favorite restaurant. Since we don't go out to eat often, he was just thrilled.
Our visit to Duke went pretty well. I had to page Dr. K last Sunday night since Alex was in a lot of pain from his skin GvH. Up until that point, it had only been a minor annoyance to him. Dr. K decided to give him a dose of IV Zenopax and then give it weekly for six doses. Since he's already had three, he has three more consecutive weeks of it. Then he will get it every other week for approximately 3 months. Dr. K prescribed a new cream that is soothing to the skin. It is usually used on burn victims, but it seems to help. Alex will also start on another oral immuno-suppressant called Rapamune. We had hoped to be weaning meds at this point, not adding them! It takes about a month to get all the blood work back, but the other tests Alex had look pretty good.
Babs, it was great to finally meet you in person. Thank you so much for all you've done for Alex and our family :-) Howard and Sandy, thanks for picking us up at the airport and for taking us back the next day to get our rental car. As always, it was great to see you both. Give Pisher a hug from us. Pat, thanks for the yummy meal at the Cracker Barrel. It was fun hanging out with you and Isaiah. Wish we had more time to do some fun things. We hope Isaiah is feeling better and will not need anymore IVIG! Marcella, thank you for the delicious Italian meal. It was great to see you and Sean. If you're ever out West, you know you have a place to stay :-)
We hope everyone has a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!
Jill, Steve, Alex and Emily
Wednesday, November 3, 2004 3:22 PM PST
******CHECK OUT THE HALLOWEEN PICTURES******
Hi Faithful Followers :-)
Alex had his clinic visit today. He got IVIG, Zenopax and Pentamadine. When I left last week I thought the plan on the Zenopax was to give it every three weeks. Apparently the plan changed to giving it today, in two weeks, and then every three weeks. Additionally, they really want to add Rapamune, an immune suppressant, to the mix. I had hoped to be weaning drugs, not adding them at this point. We'll discuss it with Dr. K next week.
Alex and I leave on Saturday for Duke for Alex's 2 year post transplant studies. We're going to stay with cousins on Saturday night and head to Duke Sunday afternoon. Sandy, if you read this, Alex wants to know what's for dinner Saturday night. He says he really likes your cooking :-) Alex has a full day of testing on Monday. He will have an echocardiogram, pulmonary function test, a chest x-ray, an MRI of his brain and sinuses, and a bone density test as well as a LOT of lab work. Since I usually just about pass out when they take 12-15 tubes of blood out of him, Alex told me I could wait outside. We will see Dr. K in clinic on Tuesday and have a meeting on Wednesday before we fly home to discuss the test results.
We're looking forward to visiting with Howard, Sandy and their cute dog Pisher. We also can't wait to see Pat and Isaiah. I just found out that Marcella and Sean will be there too. We're looking forward to the reunion. We'll miss seeing Eleasha and Cody this trip and I'm sure we'll miss a few others. Wish we could all be there the same week! And last, but not least, we will get to meet Alex's Chemo Angels Babs and Carey on our layover in Chicago. I better not forget my camera :-)
I'm not taking my computer with me, so I'll update when we return. We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Sunday, October 31, 2004 9:32 PM PST
Happy Halloween! Check out the new pictures of all of us dressed up.
We hope everyone had a safe and fun-filled night :-) The kids had fun but didn't go too far this year. Emily had a lot of fun handing out candy. She got scared of the HUGE pirate ship down the street that some of our neighbors spent two weeks building. It was really cool, but scary for little ones. Alex enjoyed going out with his friend Zakkai this year. It was fun to go around as a group.
The kids had a Halloween parade at school on Friday that was really cute. Alex was all excited about dressing up but then he tried to chicken out of walking in the parade so his teacher told him that he was the coolest Ninja and had to walk so he did. Emily of course thought it was great. The funniest thing was all the teachers dressed up as the principal, wigs and all. It was a hoot.
Alex's GvH skin rash is pretty bad. We're glad we're heading to Duke next week. I'll update after Alex's Wednesday clinic visit.
We hope everyone has a sunny week. Thanks for checking in on us and don't forget to sign the guestbook.
Jill, Steve, Alex and Emily
Tuesday, October 26, 2004 3:30 PM PDT
----WEDNESDAY UPDATE----
What a day!!! We had a slight change of plans today after the doctor saw Alex. The rash is definitely GvH so the Growth Hormone Testing was cancelled so that they could give the IV Zenopax. Unfortunately Alex is going to have to go back to getting it every three weeks. This makes things tricky since his other IV med is due every four weeks. This basically means more trips to the hospital and more missed school. Grrrrr!!!! And, if Alex's rash isn't better by next week, they want to add another immuno-suppressive drug.
After spending a few hours in the day hospital, we headed to the cafeteria for lunch and then on to Alex's eye appointment. The doctor came in and I asked him to use an alcohol wipe to wipe down the machine where Alex would be putting his face. He walked out, sent the nurse in to wipe it down and didn't come back for 1 1/2 hours. We were ready to walk out of there. If Alex's eyes hadn't been dilated, I think we would have! The next time we have to go, I'm taking my own alcohol wipe and doing it myself. What does it take, 5 seconds? On the way out, the nurse felt bad that we'd been there three hours so she gave Alex a toy. Of course she asked if it was o.k. with me after she gave it to him. I told her that Alex could open a Toys 'R Us store and he didn't need anything else. Alex was thrilled, and I guess he deserved it after waiting sooooooo long to see the doctor for five minutes.
Today was definitely a punching bag type of day. Now what happened to my punching bag???
-----TUESDAY UPDATE-----
Hi Everyone -
Well, the big news here is the rain! It rained and rained last week and is getting ready to drench us again. I can't remember a time when the rain has come this early to southern california. Last year it rained on Halloween, and I thought that was early.
Speaking of Halloween, the kids can't wait. Emily is going to be a bride and Alex is going to be a Ninja. On Friday there is a parade at school and I think there will be a few parties :-) Alex's class earned a party, so I know it will be a fun day in 2nd grade.
Alex has a strange rash that looks like hives but isn't responding to benadryl or his many creams. Thankfully it's not bothering him. He has his growth hormone testing tomorrow and he gets a physical for that as part of the study he's on so at least one of his doctors can take a look at it. He also has an appointment with the retinal specialist to re-check his retina.
Special congratulations to our friend Spencer who is flying home to California today after 6 months at Duke. Kerri, Brian and Spencer, we're so happy for you!!! www.caringbridge.com/ca/spencerrocket
We hope everyone is having a great week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!
Jill, Steve, Alex and Emily
Sunday, October 17, 2004 9:03 PM PDT
**************NEW PICTURES ADDED 10/17/04*****************
Hi Everyone -
I think this is the longest I've gone without updating. In this case, no news is good news! Our weeks are still pretty hectic with school, homework, and physical therapy visits. Last Friday the kids had no school and we headed up to Camp Ronald McDonald for Good Times. It's a cancer camp in the local mountains. We had been trying to go to Family Camp for the last three years, but Alex was never well enough to go. Due to the lovely Los Angeles traffic it took us 4 hours and 20 minutes to drive up to camp. (It only took two hours and 15 minutes to drive home). We were so happy when we finally arrived and got our bunk assignment. We unpacked and headed to dinner. The food was surprisingly good and the cooks and dishwashers volunteered their time for the weekend. After dinner we had to draw a family monster. We used Steve's head, one of my hands, one of Emily's hands, Steve's belly button, and one of Emily's and Alex's feet. It was pretty goofy looking. Emily had a great time coloring it. She spent all her free time over the weekend with a marker in her hand! After all this fun it was off to bed. While we were walking back to our bunk Emily noticed all the stars in the sky and commented that we must be in outer space. I'm sure it felt like that to her after the drive up the mountain :-) Stars aren't something we usually see in the city.
Saturday after breakfast at camp we played some games. Then they had stations you could visit. We did goofy family photos (I'll post them when I get them), Emily went fishing and caught a fish. She was thrilled to have caught a fish but didn't want to have anything to do with the fish. She was pretty lucky to snag one since only one other person caught one. She thought she caught Daddy some dinner, but we told her we had to throw it back so someone else could try to catch it. Alex and Daddy enjoyed archery when Emily and I were fishing. Then it was time for lunch and a nap. Since we fell asleep for more than the allotted hour, we missed a few afternoon activities but were up in time for the carnival. It started to get windy and looked like it was going to rain so we moved inside and played games until dinner. Alex and Daddy played a lot of chess. After dinner there was a talent show. I was totally shocked to see Alex stand up on a chair in front of everyone to be the magician's assistant. It was pretty cute. After the talent show, the kids and counselors made a haunted house while the parents had a meeting. The counselors at camp were awesome. They were so good with all the kids and really loved what they were doing.
Sunday morning we had breakfast and a closing ceremony. We took some pictures and said good-bye to all our new friends. Both Alex and Emily can't wait to go back to camp! Mom and Dad are totally exhausted, but the fun weekend was worth it.
Alex has no scheduled medical appointments this week except for physical therapy. Yippee!!!
We hope everyone has a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, October 6, 2004 9:09 PM PDT
Hi Everyone -
Drum roll please...Alex's platelets are NORMAL!!!! They were 164 today and the low end of normal is 150. Everything else looks pretty good. Alex was funny today on the drive into clinic. He told me he didn't want a traveling nurse but he wanted one of his old nurses. There are about eight traveling nurses in Hem/Onc and he seems to always get one of them. I think it's pretty interesting and everyone has been really nice, but Alex doesn't like change.
The other good news is that we can go back to clinic in one month. We just have to be aggressive about getting Alex's creams on for his skin GvH. We do have other appointments this month for neuropsych testing and growth hormone testing.
Alex, Steve and I got a flu shot today. Emily gets one tomorrow. Alex was really brave and didn't flinch. Steve was o.k. and I nearly passed out! I used to be o.k. going to the doctor but since Alex's diagnosis I can't handle it. I was pretty floored when Alex's doctor at CHLA told me to check with Dr. K to see if Alex could get the shot. At least she now knows me well enough to know that I"m going to get the stamp of approval from Dr. K before agreeing to anything.
For those of you college football fans out there, the CAL vs USC (University of Spoiled Children) game is going to be televised on ABC at 12:30 Pacific time on Saturday. CAL is ranked #7 and USC is #1. It should be a great game. GO BEARS!!!!!!!
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!! It has come to my attention that some of our visitors don't want to sign the guestbook because they don't want to leave their e-mail, city, etc. You can just leave your name. It brightens our day when we get messages, so please take the time to say Hi :-)
Jill, Steve, Alex and Emily
Monday, October 4, 2004 9:39 PM PDT
Hi Everyone -
Our trip to San Francisco was a lot easier this time around...we flew! We still had to find a potty for Emily every hour or so, but at least it didn't delay us from getting to our destination. My mom says it's payback since I had to check out the plumbing everywhere we went when I was young.
My brother's wedding was lovely and Janet looked beautiful. Everything went off without a hitch. My mom was so proud that she raised one child who could do everything "just right". I always say that my mom and brother are two peas in a pod :-) I'm more the backyard BBQ type!
It was an interesting weekend in San Francisco since all the major hotels are on strike. We stayed in a small hotel that wasn't on strike but the noise from the hotel strikers next door was deafening. Alex decided to pick up the beat of what they were drumming to drive me crazy. Steve told my brother (who is a drummer) about it and now they're conspiring to get Alex a set of drums. Won't the neighbors love us?
One of Alex's doctors from CHLA is going to talk to his class at school tomorrow. He has an all day clinic and day hospital visit on Wednesday for IVIG, Pentamadine and Zenopax. This is the first time we've gone four weeks without visiting the clinic. Unfortunately Alex's skin GvH has flared up so I don't think they'll let Alex go unchecked for four weeks again :-( I'll update again after Alex's visit to clinic.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!
Jill, Steve, Alex and Emily
Wednesday, September 29, 2004 7:29 PM PDT
Hi Everyone -
I can't believe a week's gone by since my last update. Time is speeding by here...it seems to go faster when we're busy.
I forgot to post the info for the school fundraiser. The website is www.innisbrook.com and our school number is 116016. Everyone I've talked to says they have quality wrapping paper. I ordered a few other things as well. Check it out, but don't feel obligated to get anything!
Last Thursday Emily started her ice skating lessons. She enjoyed them even though she spent the majority of the time on her bottom on the ice. She did a great job getting back up though :-) I wasn't paying too much attention to her since there were Olympic champions working out. Anyone remember Randy Gardner and Tai Babilonia? How about Tim Goebel? It was pretty exciting to see such talent close up! Frank Carol, the Olympic coach was also in attendance. I guess it's a great place to get noticed if you're not on your bottom :-)
Last weekend Alex went to Hermosa Beach to meet with some Team in Training triathletes who he is going to be an honored hero for. They took lots of pictures and talked to Alex. He's excited to motivate people to raise money for a cure.
This week we've been busy with school stuff, Physical Therapy and getting ready to head to San Francisco for Uncle Steve's wedding. Life has been pretty normal, but we know that things can change in a heartbeat and don't take anything for granted.
It is with a heavy heart that I write that our buddy Jordan passed away last Sunday. He fought long and hard but his little body just gave out. Please keep Carrie and Patrick in your prayers as they deal with the loss of their precious child. www.caringbridge.com/il/jordan
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!
Jill, Steve, Alex and Emily
Wednesday, September 22, 2004 7:58 PM PDT
Hi Everyone -
It's been really nice here so Steve decided to play hooky from work today and we went to the beach while the kids were in school. We haven't done anything alone in awhile, so it was nice. We're slowly getting into a routine for school and I'm still trying to manage the paper nightmare.
Speaking of nightmares, Alex has been having some recently. I asked if he could remember what they were about and he told me he kept screaming NO, NO because someone was trying to take food away from him. If you haven't had a kid on steroids you might not get this, but we couldn't stop laughing.
The other "event" I thought I'd share was our experience trying to get on the elevator at CHLB yesterday after physical therapy. Alex was wearing his mask as he always does in a hospital. An employee was taking someone upstairs and she took one look at Alex and told us we couldn't get on the elevator since her patient was immuno-suppressed. I told her that Alex was also immuno-suppressed and he was wearing the mask to protect himself. She said sorry and closed the doors. Alex couldn't believe it. He was so mad. I felt like yelling after her that cancer isn't contagious. That's actually the first incident we've had with the mask and I just find it surprising that it happened in a hospital where one would think people would have a clue. Of course, the "immuno-suppressed patient" was not wearing a mask!
Tomorrow is my first day to volunteer in Emily's classroom. I found out that I'm going to be helping out with cooking. My mom thought that was hilarious since she was a home economics teacher and I don't like to cook. However, I think it will be fun helping 5 year olds make a mess :-) However, I don't want to think about clean-up! Emily is taking a six week ice skating class starting tomorrow morning and it's Back to School Night. Just another typical crazy day around here.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emily
p.s. - Jordan and Kevin are still in PICU and could use your prayers. See previous update for web sites.
p.p.s. - HAPPY 9th BIRTHDAY ISAIAH www.caringbridge.com/mi/isaiah
Tuesday, September 14, 2004 10:29 PM PDT
*********************NEW PICTURES ADDED 9/14**********************
Hi Everyone -
We're trying to get into the school groove around here. Alex and Emily seem to be enjoying school. I somehow got myself signed up to volunteer in Emily's class every other Thursday. I'm going to see if I can help out in Alex's class every once in a while, but not on a regular basis.
Tuesday is the school's big day for sending information home. I'm pretty overwhelmed with all the papers that are being sent our way. Today there was info for FOUR fundraisers. I looked through some of them and they do have interesting things. Some of them are available on-line, so I'll post that info later in the week or on the weekend for those of you out of towners that would like to support our local elementary school.
Last weekend Emily decided that she wanted bangs so she cut her hair. I have to say she did a pretty good job. She told me it was easy :-) She landed in time-out and I'm now watching her like a hawk when she has scissors. For those enquiring minds that want to know, she did sleep through the night last Friday after falling asleep at 6:30 p.m. she didn't wake up until 7:00 a.m.
Our little buddy Jordan is still critically ill but is holding his own. He could still use your prayers. www.caringbridge.com/il/jordan We also have a cyber friend who is on life-support but is making baby steps towards recovery. His website is www.caringbridge.com/va/kevin
After all we've been through and all we've seen others go through, we'll never take life for granted. This Rosh Hashanah we'd like to wish everyone a happy and healthy New Year. L'shana tova.
Jill, Steve, Alex and Emily
Friday, September 10, 2004 10:42 PM PDT
Hi Everyone -
We arrived home from our vacation and jumped right into school preparations. It's been one crazy week! Emily had her Kindergarten orientation on Tuesday and both of the kids started school on Wednesday. Alex loves school and wanted to know why it didn't go until 5:00. Emily likes her Kindergarten class and the CDC (Child Development Center) where she goes on Wednesday morning and Tuesday, Wednesday and Thursday afternoon. She'll be home with me in the morning except for Wednesday. On Wednesday I went to check on her in the CDC after I attended the new parent orientation and she was doing fine. I had about an hour and then had to go back to school for Alex's IEP meeting so I decided to go and walk Emily to her Kindergarten class since it was the first day. Big mistake...as soon as she saw me she burst into tears. She was fine by the time we got to her Kindergarten class. She told me not to come check on her the next day so she wouldn't cry. That afternoon I went to get her from the CDC and I couldn't find her. Apparently her class was at the transition site across the street but no one had told me that's where Emily was going to be.
Thursday I had to pick Alex up from the nurses office since he went there with a pain. I was basically already out the door when they called since I had to get him to Physical Therapy. We ended up being a few minutes late, but hopefully by next week we'll iron things out. I think Alex didn't feel well since he hadn't had anything to drink all day. I sent him with a large water bottle as well as a juice box in his lunch. It's also been like a swamp here. The humidity the other day was 78 nd it's been in the 80's. No one here has air-conditioning since the ocean breeze is our cooling system. Well, we haven't had an ocean breeze lately. It actually sprinkled a little yesterday. Not the weather us native Californian's are used to!
Alex had his clinic visit today and his labs looked great. His platelets hit an all time post transplant high of 146! The low end of normal is 150. He had a few counts that were a little high or a little low but nothing to worry about. And, best news of all, we don't have to go back for one whole month. Alex and I were so excited. Of course Alex then says he wants to go every four months. I told him not to get ahead of himself but I have to admit that sounds divine.
Emily was so exhausted from her week that she fell asleep at 6:30 tonight. I hope she sleeps through until morning and isn't bright eyed and bushy tailed at 4:00 a.m.! She managed to pick up a slight cold on Sunday, but is fine now. Of course Alex got it from her and has had a stuffy nose all week. He just got over the last cold at the beginning of our trip. It takes him more than twice as long to get over things since his immune function is not normal.
I wish I had good news to report about baby Jordan, but he seems to be getting worse not better. The doctors still don't know what's going on. Jordan did have his 2nd transplant today so let's pray that it's not too late for his new cells to take over and help him heal. You can check in on Jordan at www.caringbridge.com/il/jordan
We hope everyone has a sunny (and not humid) weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!!!!!
Jill, Steve, Alex and Emiy
p.s. - We'll try to get some new pictures up soon.
Friday, September 3, 2004 1:36 PM PDT
Hi Everyone -
We're having a fun trip. The kids loved stopping at the Apple Farm Inn in San Luis Obispo for the night on the way up the coast. We stopped at the Avila Valley Barn and they had quite a few animals for the kids to look at. They also had fresh pies and fruits and veggies. We plan on stopping there on the way home too. Thanks for the suggestion Kerri! Driving with kids takes a lot longer with all the potty breaks. I think Emily has to pee on the hour. We made it to Grandma's and we've been busy visiting with friends and family. We've had some pool time and visited Pixie Playland. They have a few rides and the kids enjoyed it. Yesterday Steve and I went into Berkeley in the morning and we drove down to San Jose to see cousins Laurie, Nic and baby Josiah in the afternoon. We went to the Team in Training practice to tell Alex's story. A lot of people have been following Alex's progress the last few years and were happy to finally meet him. We were so impressed to see so many people out there training to run and raise money for a cure. Tomorrow it's off to Tiburon to see Uncle Steve and Aunt Janet. Uncle Mike is coming over later in the day and on Sunday we head back down the coast. We'll stop to see cousins Rachel, Chet, Amy and Julie before we head back down to San Luis Obispo for the night. Then it's home on Labor Day. We hope everyone has a fun and safe holiday weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!
Our budy baby Jordan has taken a turn for the worse and is back in the PICU and the doctors can't figure out what's wrong with him. Please pray for the doctors to find a way to help him. www.caringbridge.com/il/jordan
Wednesday, August 25, 2004 10:24 PM PDT
Hi Everyone -
I feel like a juggler! It's hard to go from being totally isolated to running around like a crazy person. Just trying to fit everything in the schedule is driving me crazy! Last Friday I was running back and forth to the Elementary school. First I went to sign Emily up for the CDC, then I took Alex to meet his teacher and then had to go back to take Emily to visit the CDC. I was then going to go back and get Alex and go back to see his teacher but she found Emily and me at the CDC and said she had to leave. Tomorrow I have to take papers to the CDC and to the school. I can barely deal with all the paper work for two kids. I don't know how the schools deal with it for hundreds of kids.
Saturday we went to my mom's for a little swimming. Emily is now a fish. She wanted to swim back and forth, back and forth, back and forth. I was exhausted watching her. She also liked diving on the steps for rings. Alex floated around on his pool noodle. We went out to an early dinner at BJ's since I knew it wouldn't be crowded. The kids loved it and Alex kept thanking us for taking him out.
On Sunday Steve had to go into the office to work. Alex, Emily and I just hung out around the house. Their big excitement was going to Mc Donald's for an Ice Cream cone. It's walking distance but Alex decided it was too hot so we drove over.
Alex had Physical Therapy yesterday and afterwards we went across the street to get his braces. They needed some adjustments so we are going to get them tomorrow. While we were there, Alex saw a lady with a prosthetic leg and was pretty freaked out. When we got into the exam room we had a discussion about it. I told Alex about a friend I had growing up who lost her leg to bone cancer. Alex told me that he could never deal with that and he got the easier kind of cancer. I wouldn't say what he's been through has been easy! I had Alex's PT listen to his lungs and she said they sounded clear. She'll check again tomorrow and if they still sound clear we will be leaving over the weekend for our big road trip as Alex is calling it. We're going to drive up the California coast. Our destination is Grandma's and we plan to see family and friends all around the San Francisco Bay area. I have info for not one, not two, but three hospitals in the area. I think we'll be covered if we need anything.
Today I had to pick up Emily early from school since she was coughing and couldn't sleep and was keeping everyone else up. She sounds like Alex, so I'm pretty sure she got it form him. Tomorrow Emily has another modeling gig at Lakeshore. She'll go to PT with us and then we'll head over. It's only a few minutes away from where we'll be for PT. She's pretty excited. I think she just wants to go shopping again :-)
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill, Steve, Alex and Emily
Friday, August 20, 2004 1:13 PM PDT
Hi Everyone -
Sorry for the update delay. Alex had a good clinic visit on Wednesday. He got his IVIG, Zenopax and Pentamadine. His labs all looked good and his platelets were 106. Alex took a Benadryl snooze and when he woke up he asked for his labs. It's so funny to see him reading his labs. Most adults probably couldn't figure it out, but my 8 year old knows it all! Since things are stable I argued for clinic visits every four weeks. I didn't win the argument, but if things look good when we go back on the 10th, we will then go to clinic visits every four weeks. Sunday marks the 3 year anniversary of Alex's diagnosis. It's weird to think that if he hadn't relapsed he would be ending treatment this Fall. We feel like we've been on a roller coaster ride the last three years and hope the bumps smooth out. We're all looking forward to some normalcy.
Emily had a great time at her modeling gig and an even better time shopping afterwards. I signed her up for a few days a week at the child development center at her Elementary school for after school care so that I can take Alex to his Physical Therapy appointments a little earlier. I also have her signed up for Wednesday mornings since that's Alex's clinic day. We have to go over there this afternoon for Emily to meet everyone. Emily wants to take ice skating so she will be doing that on Thursday morning before school. Her half day Kindergarten goes from 11:30 - 2:50 and I think Alex will be going from 8:20 - 2:07. School starts on September 8th. I guess it will be multiple trips to the school, but it's really close by.
Alex has a cough and a slight fever. I'm trying not to stick the thermometer in his mouth every 5 minutes. I'm sure all the other cancer moms out there can relate! Hopefully he won't get any worse. I'm always a nervous wreck when Alex gets any kind of bug.
We hope everyone has a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook.
Jill, Steve, Alex and Emily
Monday, August 16, 2004 12:57 PM PDT
********CHECK OUT THE NEW PICTURES*********
ALEX IS HOME!!! Of course he and Emily started arguing in the car on the way home from the airport. I sure did NOT miss all the bickering. I think Alex is happy to be home, but he told us they were nicer at camp. Hmmm....could he now be spoiled from all the attention and never being told No??? The first thing he told me today is that he's bored. Alex came home with a whole extra duffle bag of toys. Unfortunately his masterpiece art work broke. I thought I could just get another piece of glass for the frame, but the way he made the masterpiece was to color on the glass. Hopefully we can re-create it. He also lost a few things and is upset so hopefully they'll turn up. A huge thank-you to Alex's counselor Pinch for putting up with Alex for two weeks. We think you deserve a medal! And thank you to Chai Lifeline for making it possible for children with cancer to have a fun camp experience and forget about their illness for two weeks.
Tomorrow Emily has a modeling assignment for Lakeshore learning. I think I sent in her picture when she was two and they've never called me and I actually forgot about it. They're doing a photo shoot tomorrow for the box of a product. They want four kids to play with the toy while they take pictures. They said it should take under an hour. For her time Emily gets a $50 gift certificate to spend in their store. She's so excited and is telling everyone who will listen that she is going to be a model.
My mom is going to take Alex to physical therapy tomorrow. Then Alex has a long clinic day at CHLA on Wednesday to get tanked up on IV meds. Alex will also have labs done. It's been three weeks and the longest he's gone without labs or a clinic visit since transplant. I'm a little nervous to see his numbers, but hopefully everything will check out o.k. Then Thursday he has another Physical Therapy appointment. Mrs. Bailey is planning on coming by twice this week to work with Alex. Busy, busy, busy!
Our little friend Jordan is out of PICU, but not out of the woods. www.caringbridge.com/il/jordan
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!
Jill, Steve, Alex and Emily
Thursday, August 12, 2004 4:03 PM PDT
Day + 639, 21 months post transplant!
Hi Everyone -
Alex is coming home in three days...not that I'm counting or anything :-) He called today to tell me it's been raining since yesterday. All in all, I think they've had pretty good weather for the east. Alex is a true California boy and doesn't like rain. He had fun on his shopping spree yesterday in Manhattan. He said they were going to go to the beach after that but it had started to rain. He got to go on a helicopter ride one day and he said that was his favorite thing to do so far. He is also quite happy that his pottery is almost done. Whatever he's doing to it is taking a few days.
Steve is in San Diego for a conference and will be home tonight so Emily and I have been on our own for a few days. Emily has been so excited to have me all to herself. That's all she's been talking about. Last night was not so fun when she woke up at 2 a.m. and threw up. She seems fine so far today so hopefully she can go to school tomorrow to play with her friends. She only has a few weeks left of preschool and then she heads to "big kids school".
Our friend baby Jordan is holding his own but is still in PICU and very ill. Jordan was transplanted about a month after Alex and was in the room next door for a few weeks before Alex was discharged. www.caringbridge.com/il/jordan
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook.
Jill, Steve, Alex and Emily
Monday, August 9, 2004 4:07 PM PDT
****URGENT PRAYER REQUEST FOR OUR LITTLE BUDDY BABY JORDAN www.caringbridge.com/il/jordan****
Hi Everyone -
Alex is having a great time at camp and isn't homesick at all. He tried to call us on Sunday, but I was juggling all my stuff and Steve's when we were out and I didn't get to the phone fast enough. Later in the afternoon we went to the pool and I forgot the cell phone in the room and Alex called again. There was also a message on our home phone telling us to call him. I felt so bad that I'd missed him. His counselor called last night and said everything was fine and not to worry. Alex did finally reach me this afternoon. We actually talked for ten whole minutes :-) He's having fun making pottery and doing art projects. He went on an ATV yesterday and said it was "way cool". They had a talent show last night but he decided he couldn't get up in front of everyone so he just watched. He said Zakkai was really funny. He can't wait to go into Manhattan for a shopping spree later this week. I'm so relieved that he's having a great time. If anyone deserves to have some fun, Alex sure does.
Steve and I enjoyed our weekend away. The Pageant of the Masters was great and we had some pool time which we always enjoy. We had a couple of nice dinners and enjoyed seeing Richard and Kim. We're off to The Who concert tonight. Nana is going to bring Emily home tomorrow. She's been having fun at Camp Nana. I'm meeting my friend Debbie tomorrow and Tamah and I have plans later in the week. I plan to enjoy my week, but hope it goes by fast since I miss my little guy.
Thanks to everyone who has sent Alex mail at camp. His counselor said that he has gotten more mail than anyone there. Alex thinks it's great! Also, thank you to Chemo Angel Babs for my "mini spa" treatments :-)
We hope everyone's week is off to a good start. Thanks for checking in on us and don't forget to sign the guestbook!!!!
Jill, Steve, Alex and Emily
Wednesday, August 4, 2004 10:01 AM PDT
Friday Update...
Alex called yesterday and said he's having a good time. He had been on the speed boat, had done some baking, and met Zakkai in the arcade. Our conversation lasted all of 3 minutes, so I don't know everything he's been up to but he sounded good. I have no idea when he will call again, but he didn't sound homesick. I think I'm having a harder time than he is with separation anxiety!
Wednesday update...
Alex got off to camp on Monday. I had Steve take him to the airport because Alex and I would have ended up in a puddle of tears had I gone. We went over to Cousin Andrew's for dinner and when we got home there were three messages telling us Alex got to camp. One from Alex, one from the camp director and one from Alex's counselor. Tamah called to tell me that Zakkai told her he had checked in on Alex a few times and that Alex is having fun. Apparently he is having so much fun that he hasn't had time to check in with us!
Emily will be going to "Camp Nana" on Friday for a few days while Steve and I go down to Laguna. We're going to the Pageant of the Masters art show that we enjoyed so much last year. We're meeting Steve's brother Richard and wife Kim down there for the show. Then when we come back to L.A. we're going to "The Who" concert at the Hollywood Bowl. Emily is very excited to have Mommy all to herself while Alex is gone. She didn't seem to care too much that she also had Daddy all to herself and that's a big change. She's usually a Daddy's girl.
Happy Birthday to Steve, Aunt Janet and Spencer's mom Kerri today!
We'll update more when we get a report from Alex the camper.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill, Steve, Alex and Emily
Tuesday, July 27, 2004 7:43 PM PDT
Hi Everyone -
We had a change of plans last weekend when Steve got sick. I'm not sure what we're going to do with him. Almost every time he gets on a plane he gets sick. Unfortunately he passed it on to me, so we're both feeling bad and have a fever. We've been walking around the house with masks on and have been getting lots of take-out food. So far the kids are fine. I'm really worried about Alex getting it since he leaves for camp on Monday. He's so excited and I would hate for his trip to be ruined. Also, anytime he gets a fever it's a big deal that could require hospitalization while they rule out a line infection from his port.
If anyone would like to send Alex mail at camp the address is :
Camp Simcha
430 White Road
Glen Spey, NY 12737
Alex leaves for camp on August 2nd and returns on the 15th.
We went to a Pizza Party last Thursday to meet some of the boys going to camp and the counselors that are traveling with them. Alex had a great time. The other moms call it "Camp Spoil Me" and Alex thinks that's hilarious. Thankfully I've packed some of his clothes and labeled them since all I did today was lie around.
Grandma is coming to visit next Friday and we're going to a bridal shower for my brother's fiance Janet on Saturday. Uncle Richard is coming up to visit on Sunday. It should be a full weekend, so I hope we're all healthy for it.
Steve is taking Alex to clinic tomorrow since he's somewhat on the mend and doesn't have a fever anymore. He still has to wear a mask so he doesn't infect any of the other kids. Alex is getting a dose of Zenopax and IVIG. He also wanted to see his psychologist Dr. Katie, so she'll stop by to visit. I'll update with medical info tomorrow night or Thursday.
We hope everyone is having a healthy week! Thanks for checking in on us and don't forget to sign the guestbook!!!
Wednesday update -
Platelets are 132! All the other labs look good. Clinic went smoothly and Alex doesn't go back for 3 weeks.
Jill, Steve, Alex and Emily
Wednesday, July 21, 2004 7:58 PM PDT
Hi Everyone -
Alex didn't have a clinic visit this week, but we headed to Long Beach twice for Physical Therapy or "Pain and Torture" as his therapist calls it. He had casts made of his feet today for his braces. I was really happy that they were able to do it today so that we didn't have to make another trip down to Long Beach for it.
Steve was off to D.C. again on Monday. He will get in later tonight so at least we can wish each other a Happy Anniversary before we both collapse. I showed the kids our wedding video and their commentary was a hoot. They didn't like Steve's hair. Emily liked my dress but wanted to know why I had on so much lipstick. Uncle Steve was in his rock band phase and had long black hair. They said he looked like a girl. And they thought that Grandma and Nana looked funny. I told them that they had to remember that fashions were different 14 years ago!
Tomorrow Alex and I are going to a Pizza Party from Chai LIfeline. It's for all the kids to meet before they go to camp. There are 9 boys going from the Los Angeles area. Alex is looking forward to camp but is a little nervous. He's never been away from home before and he will be gone for two weeks. He saw a video that Zakkai brought back from last year and thought it looked like a lot of fun. Alex doesn't like to try new things, so I hope his counselor is engaging and can get him to try things. It usually takes a lot of coaxing to get Alex to do anything new.
On Sunday I'm going to go to Catalina Island with Aunt Marilyn. It's about an hour and forty five minute boat ride from Marina del Rey. I haven't been there since I was in Camp Fire girls. We'll have lunch there and shop a little.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill, Steve, Alex and Emily
Wednesday, July 14, 2004 8:58 PM PDT
DAY + 610
Hi Everyone -
Alex had his long clinic day today and got tanked up on IV meds. It actually went pretty smoothly, but it takes a lot of time. We got there at 7:30 a.m. and left at 1:30 p.m.. Alex's platelets were 118, and we were very pleased that they stayed above 100. Alex's favorite Dr. at CHLA was in clinic today. We wish we could see her all of the time. Alex will go back in two weeks for his Zenopax and he will get an extra dose of IVIG since he's going to camp the following week. He will then go for three weeks with no clinic visit. That will be a first!
Alex's physical therapy is going well. He likes his therapist and says that it's more fun to go somewhere than to do PT at home. We're meeting with the orthotist next week to discuss Alex's ankle braces. The braces that we were originally going to get went up to the knee, but his new therapist feels that he can get braces that only go above the ankle. It's a 20 minute drive to Children's Long Beach which is really nice. Coming home yesterday I was driving up the 405 and it was pretty empty. I was thinking it was so nice not to be stuck in traffic. Just then I see a sign flashing that says, "accident at Artesia Freeway closed". I was hoping that it was from earlier and they forgot to turn the sign off. As I approached the 110 it totally backed up so I got on the 110 and went around to the 105 and back to the 405. I felt like I had made a big circle which of course I just did. For those of you not familiar with Los Angeles freeways, it is a MAJOR mess when they close one. Imagine 5-6 lanes of bumper to bumper traffic having to be diverted.
Last weekend we went to Irvine Regional park. We had a picnic lunch and rode the train and went on the peddle boats. Unfortunately the kids were too short to peddle so guess who got to do all the work? We also went to the Orange Country Zoo. I think they have all of 5 animals. The kids still liked it but would like to go to a bigger zoo. The nice thing about the park is that it has been there for over 100 years and has a lot of shade trees. Heat continues to make Alex uncomfortable, but it wasn't too bad.
Alex has a play date with Zakkai tomorrow, his big brother from Chai Lifeline on Friday and on Saturday Brooke, Linda and Carl are coming over for a visit. Throw in Summer School, Physical therapy tomorrow, a visit from Mrs. Bailey on Friday and Emily's swimming lesson on Saturday. Pat, I guess those days of isolation were a bit less hectic and tiring!
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook. We know you're out there!!!!!
Jill, Steve, Alex and Emily
Wednesday, July 7, 2004 6:45 PM PDT
********NEW PICTURES ADDED 7/1/2004********
Hi Everyone -
We hope y'all had as much fun over the 4th of July weekend as we did! The Hollywood Bowl was really fun. The kids loved the show since Big Bird and other Sesame Street characters made an appearance and the fireworks were probably some of the best in the LA area. Our plans for the 4th changed and we ended up having Aunt Marilyn and Cousins Andrew, Dan and Julia over for a BBQ. On the 5th Steve had the day off but had to leave at noon to fly to Washington D.C. for business. He gets back later tonight. I always appreciate him more when he's gone...I'm exhausted!
Alex has a cold. I don't know if he got it from me or from one of his summer school friends. His nose is running and he has a little cough. Depending on the time of day he either tells me he feels fine or he feels horrible. Hopefully he will feel all better soon!
Alex has been on the waiting list at Miller's Children's Hospital in Long Beach for Physical Therapy since we got back from Duke at the beginning of May. We finally have a therapist and his first appointment is tomorrow. He will be going twice a week. He also needs ankle braces which they can fit him for there. His therapist worked at Duke for fifteen years and has been out here for three so she knows all about kids that have had chemo and transplants. We're not going to CHLA for PT since it's a lot farther to drive.
Emily is still enjoying preschool. Steve went to pick her up a little early last Friday and she didn't want to leave. He had to wait about thirty minutes for her to finish playing :-) She's doing great in her swimming lessons too. She floated on her back all by herself last week and she jumped in, went under, took a breath and swam a few (dog paddles) to her teacher.
We hope everyone is having a great summer. Thanks for checking in on us and don't forget to sign the guestbook!!!!
Jill, Steve, Alex and Emily
Wednesday, June 30, 2004 4:42 PM PDT
****NEW PICTURES ADDED 7/1/04****
Hi Everyone -
Alex had his clinic visit today. Steve took him since I'm still dealing with the nasty cold and cough he gave me. I told him that the next time he gets sick he can pitch a tent in the backyard!!! Alex's platelets are 130. I'm not sure I believe the number, but I"ll go with it for now. The first thing Alex said was that he can't wait to ride his bike. He has Steve out in the garage hunting for the pump to put air in the tires. All of Alex's other counts look good. He goes back in two weeks.
Summer school is going well. Alex really enjoys it and I think it's going to make a huge difference. Additionally, Mrs. Bailey is helping Alex "plug up the holes" this summer. We can't thank her enough. There should be more Mrs. Bailey's in the world!
The Relay for Life event was pretty fun. Mrs. Bailey came and walked the survivor lap with Alex. Zakkai and his dad Greg were also there for the survivor lap. It was pretty hot out so we left not long after that, but Alex and Steve and Zakkai and Greg went back later in the evening for the luminary ceremony. The event really isn't geared towards kids, but Alex and Zakkai had fun.
This weekend is going to be pretty busy. We're going to the Hollywood Bowl Saturday night for their fireworks show. We'll take a picnic dinner and are meeting my mom and some of her friends. On Sunday we plan to see our friends Doug and Deborah and their hound dog Cairo. Aunt Marilyn and Cousin Andrew are coming in this weekend and we plan to see them sometime too.
We hope everyone has a safe and fun 4th of July. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill, Steve, Alex and Emily
Wednesday, June 23, 2004 9:45 PM PDT
Hi Everyone -
Alex started summer school on Monday and loves it. I think he wishes it was longer than two hours. He's home by 10:30 and is bored by the afternoon.
Alex doesn't have a doctor visit this week. We'll head to clinic after summer school next Wednesday. Hopefully we won't be there forever since we're going later than normal.
Emily had to say good-bye to Chaya, her big sister from Chai Lifeline today. Chaya is moving across the country, and we'll all really miss her, but wish her all the best. Today she took Emily to Build a Bear, and Emily made a cute bear and dressed it in a bathing suit complete with beach towel and beach umbrella since Chaya has been taking her to the beach a lot.
On Saturday we're going to the Relay for LIfe event from the American Cancer Society. It's across the street from us at Aviation Park. Last year the kids had a pretty good time.
Steve got a nasty cold upon his return from Maryland and still sounds nasal. Emily came home sounding like a frog, got better and then picked up something else. Alex had a runny nose for a few days last week and is better now. I thought I had avoided the germs in my house but I succumbed yesterday. I hope my nasty virus doesn't last as long as Steve's. At least he's on the mend. It would have been hard to both be feeling miserable at the same time.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill, Steve, Alex and Emily
Wednesday, June 16, 2004 10:15 PM PDT
Hi Everyone -
Alex had his long clinic visit today. Did I say long? Try seven hours! They got a new computer system at CHLA that was slowing things down today. The nurses were really frustrated with it. The pharmacist didn't come in until 9 a.m. and we got there at 8 a.m. Alex usually gets his Pentamadine before the pharmacy opens, but with the new system you have to get it from the pharmacy. After Alex finally got his Pentamadine, the pharmacy prepared his IVIG and not his Zenopax. He usually gets his Zenopax first since he needs vitals every fifteen minutes for one hour. They usually do this while the IVIG is running. Alex's platelets fell to 70, but Alex hopes that they will be up again in two weeks. Since we were cutting it close getting to his 1:30 eye appointment, we left his port accessed and headed downstairs. The eye doctor says that the leisons have stayed the same and he's not concerned about them. He will re-check Alex in four months. Alex does have the beginnings of cataracts and the doctor said that he would most likely need surgery sometime in the next five years. We knew this was a possibility going into transpalnt, but chose not to think about it. Hopefully the cataracts will stay small for longer than five years! After the eye appointment we headed back up to the clinic to get Alex de-accessed. Then we finally headed home.
Emily swam by herself for the very first time yesterday. She was pretty proud of herself. She is also almost floating on her own now. The scary thing is that she has no fear of falling in. She was reaching for a pool noodle and almost toppled in. She didn't seem too concerned.
I hope the rest of the week is quiet. I'm exhausted! We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill, Steve, Alex and Emily
p.s. - You can still view the Wall Street Journal article by clicking on previous journal entries.
Saturday, June 12, 2004 4:15 PM PDT
Hi Everyone -
Alex went to visit the first grade class again and everyone was happy to see him. He had a fun time. Mrs. Bailey gave Alex a reading test and since Alex is a little below where he should be it was decided that he would benefit from summer school. Dr. K gave us the o.k. Summer school is 4 weeks long starting June 21 and is two hours a day. I'm a little nervous about sending Alex. I'm so glad things are starting to get back to *normal* , whatever that is, but along with that come some very real fears. I'd love to just put everything Alex has been through behind us, but he's going to have a lot of health and cognitive issues from all the chemo and radiation he had for the rest of his life.
The following is an article form the Wall Street Journal that talks about an 8 year old boy named Jack and his journey through transplant and back to a new normal. When I read the story, I thought I could have written it. The only real difference between Alex and Jack is that Alex is willing to tell you his life story and he's more than happy to answer any medical questions. If you haven't seen it, take a look.
We hope everyone is having a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!
Next Chapter
After Leukemia, Family
Struggles to Define 'Normal'
Jack Streeter, 8, Joins Ranks
Of Cancer Survivors
Coping After Treatment
The Challenge of Kickball
By AMY DOCKSER MARCUS
Staff Reporter of THE WALL STREET JOURNAL
June 9, 2004; Page A1
NATICK, Mass. -- This month, Jack Streeter will finish the second grade, his first full year at school since being diagnosed with leukemia. By any measure, it will be a celebratory moment.
Two years ago, his parents thought he was going to die. Now the 8-year-old boy is back at school, and thriving. He sits in the top reading group in his class. He just earned a purple belt in karate and
hit a single at a recent baseball game. This summer, he plans to go to camp.
Still, this year has been anything but ordinary for the family. After years of focusing on saving Jack's life, they are now facing a new challenge: trying to get back to normal.
"There are so many things we have to worry about for the rest of his life," says Jack's mother, Debby. "But how can I say that without sounding ungrateful, when I am so happy he is alive?"
Reminders are frequent that Jack's treatment will continue to cause him health problems. In the past two years, he had 13 cavities filled and two teeth pulled. His years of chemotherapy and radiation put him at increased risk for a range of dental problems. He underwent two surgeries to remove cataracts in his eyes, another side effect of the
drugs. His mother insists he wear sunscreen whenever he's outside because the full-body radiation makes him more susceptible to melanoma. He is tested regularly for potential cognitive and learning issues.
There have been less-anticipated problems too. Mrs. Streeter, 43, who stopped working two years ago to take care of Jack full time, says she feels adrift now, unsure whether he is well enough for her to return to work. For her husband, Larry, 48, Jack's recovery is bringing back uncomfortable echoes of an ordeal in his own life. The couple say they find it difficult to engage in small talk with other parents in this affluent suburb, 25 miles from Boston. Their relationship with many neighbors, people who rallied around the family after Jack got sick, has become strained now that he is better.
"For many people," says Scott Armstrong, Jack's oncologist at the Dana-Farber Cancer Institute in Boston, "one of the most stressful parts of cancer comes when the treatment stops."
For decades, cancer treatment has focused on trying to save a person's life, not on how it was lived afterward. But in recent years, new
therapies have helped increase the number of people surviving five years or more after diagnosis. With this growing success has come the
recognition that cancer survivors have special physical and emotional needs. Many will finish treatment and go back to their old lives, only
to find that their lives aren't the same.
The President's Cancer Panel, an advisory board established by Congress, released a report on Friday calling for more services to deal with problems people face after treatment is over. The report concludes that some survivors suffer depression and other psychological issues for years.
"We have always focused on how patients physically survive the toxicity of treatment," says Mary Morris, survivorship-research coordinator at the University of Nebraska Medical Center in Omaha, one of several hospitals that have launched studies tracking the long-term health, social and emotional issues of cancer survivors. "But we need to learn
more about how they emotionally survive and get on with their lives." Children with cancer pose special challenges of survival, since their
experience also transforms the lives of their parents, and often their wider community.
Jack was diagnosed with cancer when he was just 3 years old. His mother noticed he was unusually fatigued, and while giving him a bath, saw
bruises all over his body. He spent the next two years undergoing chemotherapy. He seemed to respond, and doctors were optimistic he
would be among the 80f children who are disease-free after two years of treatment.
But in 2001, just a few weeks after starting kindergarten, Jack relapsed. When doctors told his father the leukemia had returned, "I feared this was it," Mr. Streeter recalls. His best option, doctors
said, was a bone-marrow transplant.
After the transplant, Jack stayed home for eight months, because he had no resistance to disease. He had a tutor until he got stronger. When he
was finally well enough to go back to school in April 2003, his parents were overjoyed -- and conflicted.
"We can't begin to tell everyone how long we've waited for this day!" Mr. Streeter wrote in an online journal entry. "On the one hand, we were so happy to see Jack return to school with his friends," he wrote. But they were also nervous, he said, knowing Jack's exposure to bacteria and viruses was going to increase.
Following Rules
This year, Nell Getz, Jack's second-grade teacher at Natick Memorial Elementary School, says she has focused on getting him used to following rules. Some things he needed to learn are common issues for children who haven't spent much time in a classroom. When Jack knew the answer to a question, he shouted it out without raising his hand. He had a hard time standing quietly in line.
In order to support Jack's transition back to school, four children from his neighborhood were placed in class with him. Mrs. Getz says his two closest friends were always trying to take care of him, bringing him paper or books. She put a stop to that, insisting Jack fend for himself. "More than the other children here, Jack doesn't want to be
different," she says. "He doesn't want to be the sick kid anymore."
Earlier in the year, Mrs. Getz tried to get Jack to talk about his cancer experiences in class but he repeatedly refused, she says. She stopped asking. When she asked the children to write about something they did that was courageous, Jack wrote about breaking a board with his hands at karate class. One morning, in a group discussion, a girl mentioned Jack had been in the hospital. Mrs. Getz asked him if he wanted to say something about that. Jack declined, she says, looking
down at his sneakers.
Where Jack struggles in school is mainly at recess, Mrs. Getz says, when his closest friends go off to play kickball. Self-conscious about being less athletic, Jack, who has close-cropped blond hair and glasses, stands on the sidelines. When he first returned to school, he didn't know the rules of baseball, basketball or other games the kids
played in gym. He had spent a lot of time in bed and playing video games. His face was puffy from the steroids he took, and he had very little stamina.
A few months ago, one of his friends was reaching to pick up a mitten that fell on the floor and elbowed Jack in the stomach as he got up.
Jack hit the boy in the jaw, knocking him to the ground, and got sent to the principal's office.
Jack still won't talk about the incident. His mother thinks it came out of his growing frustration at always being the smallest, at having to try so hard to keep up physically with his friends. "When he first went back to school, he got a pass," says Mrs. Streeter. "He was the kid who had cancer. Now, he's treated like everyone else. I think he was tired of people pushing him."
For Mr. Streeter, Jack's struggles remind him of his own. Twenty years ago, at the age of 28, doctors found a large mass in Mr. Streeter's chest. At first, they thought it was benign. But during surgery, after they broke his ribs to get to it, they saw it had grown close to his heart and couldn't be removed. More tests indicated it was malignant, and the cancer had spread to lymph nodes in his abdomen. Mr. Streeter, who was married to his first wife and had a 1-year-old child at the time, underwent a year of treatment, including chemotherapy and
radiation. He lost all his hair and, at 5-feet-8, dropped to 106 pounds.
He pushed himself to go back to his job as an information-technology specialist as soon as he could. Friends would stop by his desk, he says, tell him he looked terrible, and wonder why he wasn't home resting. Instead, he started working out everyday. "I wanted to prove to everyone that I was healthy, that I had beaten it," says Mr. Streeter, who keeps in shape by training for an annual 160-mile bike ride to raise money for cancer research.
Mr. Streeter says he and his first wife grew apart. Two years after being diagnosed with cancer, he moved out of the house. The couple, who had two children together, later divorced.
He knew Debby from work and they started dating. They married, and had Jack and his younger sister, Annika, now 5. "I have been reliving everything since Jack got diagnosed," Mr. Streeter says. "Not just the being sick part, but also the difficulties in going back to your regular life."
New Focus
In April, Mrs. Streeter was in the gym at Jack's school, which was holding its annual "jumpathon" for charity. The gym was packed with children and parents watching third- and fourth-graders jumping rope. Music blared, children shouted. The students were raising funds for the American Heart Association.
For the previous two years, the event raised money for cancer research. The first year it was called "Jump for Jack," and children wore T-shirts with Jack's name on them. Last year, when Jack was able to attend class for the final months of first grade, they called it the "Jack is Back" jumpathon. The children raised a total of more than $30,000 in those two years.
Todd Kiley, the physical-education instructor who spearheaded the drive, says now that Jack is at school full time, he thought it was time to focus on another cause. Next year, Jack will be jumping rope
with others in the third grade. "I didn't want to put that kind of pressure on him," says Mr. Kiley, "having him jump rope for something associated with himself. I don't want to single him out."
Mrs. Streeter looked around at the gym, decorated with banners. Jack's name was nowhere to be found. "It's strange to be here just as another
parent coming to a school event," she says. "Strange but good." Yet this year, when children knocked on her door asking for a pledge, she
says she was reminded how hard it is to put everything behind them. Confused, the children forgot the name of the charity and said they
were collecting money for "jumping for Jack."
It hasn't been easy for the Streeters' neighbors to move on either. In many ways, Jack's health dominated the life of the neighborhood for
years, and the family acknowledges an outpouring of support. But now that Jack's treatment is over, "our relationship with the Streeters is not the same as it once was," says Rick Savoia, one of the neighbors. "We miss the closeness."
When Jack was diagnosed in 1999, Mr. Savoia's wife, Tina, was the first person Mrs. Streeter called. Mrs. Savoia later organized the neighbors so that someone cooked food for the Streeters every night. The couple frequently babysat Annika so the Streeters could stay with Jack in the hospital.
One day, after visiting Jack, Mr. Savoia says it hit him that it could have been his son, Nick -- who is one of Jack's friends -- lying in that hospital bed. Mr. Savoia, who had never been a runner, started
training for the Boston Marathon as part of a Dana-Farber program to raise money for cancer research. Mr. Savoia has raised more than $13,000 every year for the past four years running the Marathon in
honor of Jack.
Mr. Savoia's eyes welled up as he described how, every year before the Marathon started, he wrote the words, "For Jack," on the front of his
shirt. Whenever Mr. Savoia started to falter and wasn't sure he would finish, he says there was always someone on the sidelines that called out, "Keep going for Jack!" That still inspires him, he says.
In February, Mr. Savoia and Mr. Streeter went out for beer. Mr. Savoia says he confronted Mr. Streeter, asking him why he stands apart when the families watch their kids playing baseball, and why he no longer goes to as many neighborhood functions. For both men, the conversation was the first time they'd talked openly about what had been simmering beneath the surface. It also revealed how the end of Jack's treatment has widened, not closed, the gap between their lives.
Mr. Streeter told his friend that he finds it tough to join in the light-hearted banter of his neighbors. It's hard for others to appreciate that Jack's immunizations were totally wiped out by chemotherapy and he remains more vulnerable to infection than other children. He also articulated aloud for the first time his deepest fear: that even now, more than two years after Jack's bone-marrow
transplant, Jack might die from his disease -- that he could relapse or get another cancer. Mr. Savoia says his feelings were hurt, though, when Mr. Streeter added, "You don't get it."
"Maybe we don't get it totally because it's not happening to our child," Mr. Savoia said in a later interview. "But we've tried as hard as we can to get it. If we slip up sometimes, if we make a mistake or
miss something, I think it should be forgiven." He says he knows the Streeters are still struggling with how to return to normal life. He wants that life to include his family but concedes he isn't sure it
will. "I don't know what their definition of normal is anymore," he says.
Mr. and Mrs. Streeter say they aren't sure either. In March, the couple spent a weekend at a retreat sponsored by a camp for children with chronic or life-threatening illnesses. As they sat in a room with 20 other couples who had shared similar experiences, Mr. Streeter said, "This is where I feel I belong." At one point, a priest spoke to the group, telling them it's their responsibility to learn how to live in a world of smaller hurts and more easily corrected grievances. "We've expected others to understand our world and they can't," Mr. Streeter
says. "But can we go back to their lives? I don't think it's possible."
Jack's health will need to be closely monitored for the rest of his life. Mrs. Streeter says she recently looked up the medications that Jack used to take on a Web site run by the Children's Oncology Group, a
consortium of hospitals that treat pediatric cancer patients. One of his chemotherapy drugs, methotrexate, puts him at a higher risk for learning and memory problems, according to the group. It said Ifosfamide, which Jack received after his relapse, increases his risk of getting a second cancer.
For children who have had the kind of radiation treatment that Jack had, there is a 95r higher chance that they will be sterile, according to Charles Sklar, director of long-term follow-up at Memorial Sloan-Kettering Cancer Center in New York. Radiation to the brain, which Jack underwent twice, can also stunt growth. Worried because Jack
is physically smaller than his peers, his parents recently took him to an endocrinologist to discuss the possibility of taking growth hormones.
At Memorial Sloan-Kettering, child-cancer survivors are tested for cognitive problems every year to two years, even through college. Jack gets similar exams on a regular basis. "Problems can emerge for the first time 10 to 15 years down the line," says Dr. Sklar. "Radiation involves a progressive insult to the brain."
Now that Jack has passed the two-year mark since his bone-marrow transplant, the danger of relapse is receding, says Dr. Armstrong, his oncologist. But then, the doctor leaned over and knocked on a wood panel on the wall. After Jack completed the standard treatment of two years of chemotherapy, his parents threw a big party to celebrate in June 2001. Dr. Armstrong attended. At the time, it seemed Jack had responded successfully to the treatment.
When Jack relapsed a few months later, Dr. Armstrong was devastated. "I will never go to another patient's party again," he says.
Jack's unwillingness to talk about his experiences is another source of worry for his parents. According to the President's Cancer Panel report, 20f childhood-cancer survivor experience posttraumatic stress disorder, sometimes years after treatment ends. On the advice of a social worker at Dana-Farber, Mrs. Streeter started keeping a scrapbook of Jack's cancer journey. Someday, she believes, he may want to discuss what happened to him.
For now, Jack prefers to put cancer behind him. On a recent morning, he was playing in the backyard with his sister. Dressed in his uniform for baseball practice, he spread a deck of trading cards on the table on the porch. "I wasn't into sports at first," Jack said. "Now I want to do what my friends do."
He said his friends don't ask him anymore about what it was like to have cancer. "I don't really like to talk about it," Jack said. "We like to talk about sports." When asked what he missed most when he was sick and couldn't go to school, he looked up from the cards for the first time. "Everything," he said. "I missed everything."
Mrs. Streeter says that, in some ways, Jack has been more successful than his parents in finding his way back to the routines and rituals of everyday life. "For me, I never feel I belong in the same world as my neighbors," she says.
Annika needed to get ready for a birthday party and couldn't find her friend's present. She wanted her hair to be brushed and braided. Jack asked to hit some baseballs before practice started. He debated whether he should wear cleats instead of his sneakers. "People are scared about what happened to us, what happened to Jack," said Mrs. Streeter, as she listened to her children's chatter. "They want us to go back to normal quickly because the sooner we do, they can put away their fears and go back to normal too."
She's realized that surviving cancer involves more than physical recovery, she said. "I keep waiting to go back to the way things were," Mrs. Streeter said. "But then I think: What if that doesn't happen? What if this is normal?"
Wednesday, June 9, 2004 11:34 PM PDT
Hi Everyone -
Where does the time go? I can't believe another week has gone by! All is well here. Steve and Emily left for Maryland last Saturday and will be returning tomorrow night. They're having a fabulous time visiting with relatives. Steve had to work yesterday and today and Cousin Susan has been taking great care of Emily. Thanks to Susan, Dan, Jacob and Jesse for having Steve and Emily.
Alex and I spent the weekend at my mom's and had some pool time. Linda and Brooke came over Saturday afternoon to swim with us. I'd love to have a pool in my yard. I'd get up every morning and swim. On Sunday I went outlet shopping with Linda. It was a really nice day and we got some great deals.
On Monday Alex and Zakkai had some unexpected time together and Zakkai had dinner over here. He told me that my burrito was the best he had ever eaten. Of course the boys had fun playing video games :-)
I somehow managed to break another tooth even with my night guard, so I'm off to the dentist tomorrow to get it repaired. Hopefully the damage isn't too bad. Alex will stay with Zakkai or go with me.
On Friday Alex will be visiting the Elementary school again. He can't wait.
Well, that's the "Days of Our Lives". Tune in next week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill, Steve, Alex and Emily
Tuesday, June 1, 2004 7:30 PM PDT
Hi Everyone -
We had a little scare today. Alex went to the eye doctor and she saw some lesions in his left eye that she thought looked suspicious. She was concerned since she didn't see the lesions in 2002. Last year he didn't have his eyes dilated, he had a retinal scan, and scans aren't as good as dilation. She sent us over to the retinal specialist at CHLA who said he is 90-95onfident that it is not a leukemic infiltrate. He wants to see Alex back in two weeks to double check that the lesions aren't growing. Steve paged Dr. K and she said that she didn't think it could be anything. It is most likely something that was there before that was caused by the chemo or radiation. Interestingly, Alex's vision in the left eye has improved from a year ago. I'm emotionally drained after today's doctors visits.
Saturday we went to my mom's for some pool time. The kids had fun. We were going to go to dinner, but Emily had a meltdown and fell asleep. Steve, Alex and I ended up going out to eat and we brought back some food for my mom and Emily. It would have been nice to all have gone out, but when you have kids you have to be flexible!
Sunday we went to the Dodger game with Chai LIfeline. Alex and his friend Zakkai were invited to go on the field before the game to be in the pre-game show. Alex carried an American flag and Zakkai carried an Israeli flag. Alex got overheated and worn out from all the walking and being in the sun and wanted to go home. He's used to getting what he wants, but since we drove with other people I told him that he had to stay. He then had a meltdown. He did perk up near the end of the game as it got cooler. Cousin Andrew was in town so he went with us to the game. Emily was having a great time. At the start of the second inning I asked her if she knew there was a baseball game going on and she said, "where?"
Tomorrow we have clinic, so I'll give a short update after that. We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!
Jill, Steve, Alex and Emily
WEDNESDAY UPDATE
Platelets are up to 80!!! Our clinic visit was uneventful but long. Alex's immune functions are in from Duke and they show that he is at 65 percent of normal and he has 100 percent donor cells. Dr. K told us to continue to get out a little more but to stay away from sick people.
Wednesday, May 26, 2004 7:27 PM PDT
Hi Everyone -
Today Alex went for his first visit to his Elementary school. He had a great time and asked to stay longer than planned. After getting over my nervousness about him being there (of course I'll feel better when I get his immune functions in a few weeks), I realized that this visit was a huge milestone. This was the first time that Alex has been to school! Alex was diagnosed the week before Kindergarten started and relapsed the week before First Grade started. We decided to hold him back this year due to all the school he's missed, so he will be going into Second grade in the Fall. He will go for a few more visits before the end of the school year. The only problem he had was at recess when he couldn't keep up with the other kids. Since I was there with him I re-directed him and he went to visit with our next door neighbor who is in the First grade class we're visiting. Hopefully a summer of Physical Therapy will help prepare him for the Fall. I'm glad that he liked school and can't wait to go back. Thank you Mrs. Bailey for having us!!!
Emily's birthday party last Sunday was fun. The weather wasn't exactly pool weather, but we managed. Alex and Emily both enjoyed the pool. Emily has been doing great in her swim lessons and has been going under and holding her breath. It's a good thing she learned this skill since she took off on a kick board and flipped over and went under. Hayden saved the day by rescuing her. She went right back in. My mom had this huge Alligator that the kids loved to ride on. She originally bought it to get rid of the ducks who insisted on swimming around her pool and making a big mess. Apparently they're scared of the alligator.
We also had a fun visit with Grandma and were sad to see her go on Tuesday, but we're looking forward to her next visit.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!
Jill, Steve, Alex and Emily
Wednesday, May 19, 2004 7:45 PM PDT
Hi Everyone -
Saturday's BMT picnic was a lot of fun. Alex and Emily loved the train rides and the games. They both came home with a ton of junk. The highlight was getting ice cream from the Ben and Jerry's truck. We saw a few families that we know from clinic and it was nice to visit outside of the hospital setting.
Alex went in today for his Zenopax, IVIG, and Pentamadine. His FK 506 level has been running low and his GvH rash is going strong. Today's level was still very low. We were planning on trying to start to give the Zenopax every 3 weeks instead of every 2, but due to the GvH flare-up they want to continue to give it every 2 weeks. I'm a little bummed, but not surprised. Alex's platelets are holding steady at 62. I guess I should be thankful that we have two weeks off. Not that long ago we were going in every week.
I've set up a day next week for Alex to visit the 1st grade class at the local elementary school. He's pretty excited. He's worried that I'm going to embarrass him and freak out. I told him I'd be on my best behavior. I'm still a little concerned that they have a lice problem at the school that they can't seem to contain. Any suggestions on how to keep the critters away from Alex are welcome. A friend suggested having him wear a hat.
Tomorrow Emily turns 5. I can't believe my baby is growing up so fast. I feel like I've missed out on so much with her the last three years. We're taking a Care Bear cake to preschool tomorrow and having a swim party at my mom's on Sunday. She's pretty excited but told Steve that even though she's going to be 5, she's not a grown-up yet :-) I got a good chuckle out of that...hope you do too!
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill, Steve, Alex and Emily
Thursday, May 13, 2004 9:14 PM PDT
****NEW PICTURES ADDED 5/13/04*****
Hi Everyone -
We've been pretty busy around here. Last Saturday was the Mail Carrier's Stamp out Hunger food drive. We offered to help our friends out by picking up a car load of food and taking it to the food pantry. We were surprised that the food was just trickling in. We thought there would be trucks and trucks of food. Apparently they've gotten more food in past years. Alex saw a commercial awhile back about starving children and has been interested in making sure everyone has enough food ever since. When he is able to he wants to help out at the food pantry.
On Sunday, Tamah and I headed out of town for Palm Desert... alone, no kids or husbands! We had a nice relaxing time. Steve did a great job taking care of the kids while I was gone. We got back Tuesday afternoon just in time for me to whisk Emily off to her swimming lesson. She put her head under and held her breath this week as well as jumping in. She's pretty proud of herself.
Yesterday Alex and I did a few errands. He said he had fun but that I wore him out. We were gone for less than an hour. We're going to have to work on his stamina. When we were getting back in the car after loading the groceries, an older gentleman came up to me and asked if he could give me something. He had a mask that he said the Army now uses and wanted to know if Alex wanted it. I declined and told him that Alex could only use masks issued by the hospital. He went on to tell me that he had a Bone Marrow Transplant in 2000 for Non-Hodgkin's Lymphoma.
Alex and Zakkai have a play date tomorrow and on Saturday we're going to a picnic from CHLA for Bone Marrow Transplant survivors. The first person transplanted at CHLA twenty years ago is going to be there. We went to a similar party last year and the kids had a good time.
In my last update I forgot to mention that we were able to meet Spencer and his family while we were at Duke. Spencer is also from California and had the same type of leukemia that Alex had. He had his transplant the day we left North Carolina. You can check on his progress at www.caringbridge.org/ca/spencerrocket Alex actually spotted Spencer in the Children's Health Center the first day we were in North Carolina. He recognized him from his web site. I was also able to go out for coffee with Kerri one evening. Kerri and Brian, it was nice meeting you guys and we hope Spencer continues to do well. We hope to see you in November :-)
That's it for now. We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill, Steve, Alex and Emily
Thursday, May 6, 2004 9:12 PM EDT
Hi Everyone -
Check out pictures from the walk on Isaiah's web site www.caringbridge.org/mi/isaiah
We made it home in one piece. Alex and Emily slept on the first leg of the flight from Raleigh to Dallas. The second leg seemed like it was never going to end. Emily did fine. She colored the whole time and was totally content. Alex on the other hand kept asking when we were going to land. He kept looking out the window and telling me we were far from civilization. We're all pretty tired today.
We really enjoyed our time in North Carolina, but we're glad to be home. We had a lot of fun visiting with Pat, Sal, Isaiah and Mishael. We also loved spending time with Howard, Sandy and Pisher. We also saw Aunt Marilyn for dinner on Tuesday at Howard and Sandy's. We were also happy to see some of our transplant buddies...Tucker, Jordan, and Cody. We also met a transplant family from California who went to the walk to honor their little girl who didn't make it. We were on the same flight home from Raleigh to Dallas with them. Marian, Mike and Mikey, it was so nice getting to know you. We wish we could have met Princess Madi.
Medically Alex is doing well. His platelets are up to 64!!! Everything else is stable. We had hoped to start to wean Alex from some of his many meds, but Dr. K doesn't want to make any changes right now. Alex will go back to CHLA on the 19th and hopefully at that time we will start to go in every 3 weeks for his Zenopax. He will continue with his monthly IVIG and Pentamadine through next winter. Dr. K wants Alex to start more aggressive physical therapy three times a week. He will also need to get a brace for his ankles called an AFO. He has no reflexes in his ankle and lower leg from the chemotherapy. Some of our restrictions have been lifted. Alex will be able to go out and about a little more. We still need to stay away from sick people, but we will be able to go out in public when it's not too crowded. Dr. K said Alex can go to camp in August and that she wants him to go back to school in the Fall. She said it was o.k. for Alex to go for a visit to the school in June. Alex really wants to do this since he's never been to school. We'll need to go back to Duke in November for Alex's 2 year post transplant studies.
I want to wish all the Mother's out there a very HAPPY MOTHER'S DAY! Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill, Steve, Alex and Emily
Saturday, May 1, 2004 9:30PM EDT
******** CHECK OUT THE NEW PICTURES FROM THE WALK *********
Hi Everyone -
We made it to North Carolina with just a little excitement. We almost missed out connecting flight from Dallas to NC because Alex and I were in the bathroom. Apparently they now close the door of the plane 10 minutes before take-off. Since I wasn't aware of this new rule, I thought we had plenty of time. So, they closed the door behind us!
Early Friday Morning we headed to the Children's Health Center for Alex's Sinus CT, Pulmonary Function Test and Echocardiogram. Everything went pretty smoothly except when they told us they could take us earlier for the Echo and then made us wait an hour. While Alex and I were running around from test to test, Steve took Emily to the park, the duck pond and to get bagels. We were done by 12:30 and headed over to Whole Foods to grab some lunch and then we took the kids to the Toy Store on Ninth Street. Thanks Grandma for funding that expedition!
When we got back late in the afternoon, we hung out with Isaiah and his family and got Pizza together for dinner. The kids and adults had a fun time, but the adults were REALLY tired. Steve and I were jet lagged and Pat and Sal had driven 15 hours the day before on 2 hours of sleep. It's a wonder the kids had so much energy. I joked that the only thing I forgot to pack were toothpicks to keep my eyes open!
Today we got up and headed out to the Rainbow of Heroes Walk. It was nice for a little while and then the rain started so they moved everything inside. They had some bounce houses that Emily had a lot of fun in before the rain started. Alex had fun with the Duke Blue Devil and followed him everywhere. He said he was keeping him out of trouble. Emily loved the "green thing". We aren't sure if it was a crocodile, an alligator or a dragon. You can check out the picture and let us know what you think :-) Once everyone was inside, they did some awards and announced the grand total raised this year. Our $3800, was the 4th highest amount raised and the grand total raised was $64,601. The family that raised the most money raised $17,000! Thank you again to everyone who helped us to help make the fundraising effort a success. One of the awards this year went to Mishael Bingham for being the best sibling. Congratulations Mishael! Last years winner of the award was our friend Simon Bowman. At this point we went outside again to try to do the walk and we walked about half of the 5200 yards when it started to rain again and Dr. K called it so that we could do the balloon release. Alex had a balloon for his friends Tommy and Hannah and he totally lost it and started crying and couldn't stop for a good while. A few people keep coming over and asking if he was o.k. He finally perked up and ran off with Isaiah and Mishael. I have to say the balloon release is the hardest part of the walk, remembering all of our friends who fought so valiantly and didn't survive.
We were able to see a lot of our transplant friends and their families and it was really nice to see everyone again. We also saw a lot of nurses and doctors that took such great care of Alex when we were here for 8 months. I can't believe that at the end of this month we'll have been home for one year and that Alex is 18 months post transplant.
We hope everyone is having a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill, Steve, Alex and Emily
Tuesday, April 27, 2004 9:10 PM PDT
Hi Everyone -
We're almost packed for our trip to Duke. It's hard to pack for a destination where the weather is unpredictable and the forecast keeps changing. We're looking forward to seeing our family and friends in North Carolina. We've raised $3,700 for the Rainbow of Heroes Walk. Thank you to everyone who's contributed. We really appreciate your generosity. Our goal was to raise $2,000, so we're very happy :-)
Alex has a full schedule at Duke. He has an Echocardiogram, Sinus CT and Pulmonary Function test scheduled for Friday. The walk is Saturday. We have Sunday free. On Monday we're going on a picnic with our cousins and Tuesday we're back in the clinic for a long day that involves Alex giving lots of blood for the various tests, and his Zenopax. We're meeting up with Aunt Marilyn on Tuesday for dinner since she'll be in town. On Wednesday we head home. Wow, I'm tired re-reading that and I haven't experienced the three hour time change yet!
I hate to end on a sad note, but our friend Hannah passed away early this morning. She was such a great kid and we're really going to miss her. Please keep her family in your thoughts and prayers as they deal with her passing. www.caringbridge.com/ca/hannahrowley
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill
Wednesday, April 21, 2004 9:06 PM PDT
Hi Everyone -
Alex's clinic visit went pretty smoothly today thanks to Nurse Effie, but we were still there for 5 hours. Alex's platelets have climbed a tad to 53. We'll take it! The rest of his counts look good. We leave for Duke late next week, and Alex will be seen there, and then we go back to CHLA May 19th. Alex is already planning on once a month visits. I told him to be happy with every other week for now :-)
Last weekend Steve and I went to Palm Desert for some warm weather, but the weather didn't cooperate. It rained in Los Angeles and was blustery and cool in the desert, but it didn't rain. It was still nice to get away and have no responsibilities. Of course I felt guilty when I got back since Alex managed to avoid putting his steroid creams on for his GvH rash and he didn't brush his teeth all weekend. YUCK! Of course he told my mom that he didn't need his creams and that he had brushed his teeth. I think he's getting sneaky in his old age.
I don't know what's on the agenda for this weekend yet. I'll update again before we leave for Duke. There's still time to contribute to the Rainbow of Heroes walk. We've raised $3,300 with one week to go. Thanks to everyone who's contributed!
We hope everyone's having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill
Wednesday, April 14, 2004 10:27 AM PDT
Hi Everyone-
Things are going well here. Alex is feeling good and Emily is over her cold. Zakkai came over for a play date with Alex today and Tamah and I knit for a few hours. It was a mellow afternoon.
Emily started swimming lessons on Tuesday. I haven't had the opportunity to put her in lessons before and she's been trying to swim in the bathtub for the last few months. She was so excited to go to her lesson. She did a great job. She wasn't too thrilled with putting her head under water but she told me she was brave and did it! She liked her lesson so much that she asked if she could go back the next day.
Last weekend Steve decided to re-finish our deck. It was a big project that took him all weekend, but it looks great! On Saturday, Alex begged to go out to dinner, so we went to California Pizza Kitchen. I told him we could go if we sat outside. It wasn't too warm and we were the only ones eating outside. They had to turn on two heat lamps for us, but Alex thoroughly enjoyed dinner :-)
Next weeks clinic visit is going to be a long one. Alex gets IVIG, Pentamadine and Zenopax. I'll update again after that so tune in!
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!
Jill
Wednesday, April 7, 2004 9:31 PM PDT
Hi Everyone -
Drum roll please...Alex's platelets are up to 48! And, we don't have to go back to clinic for two whole weeks. YIPPEE!!! Alex and I are both so excited. The rest of Alex's counts look great. He's feeling good and can't wait for his play date with Zakkai tomorrow.
We had a nice Passover Seder on Monday night. My mom did a lot of cooking and Steve did a very nice job leading the Seder. Of course five minutes into the Seder Emily wanted to know when it was going to be time to eat. Alex really enjoyed the story of Passover this year.
Emily has a cold so she's been banished to her "cell". She keeps telling me she's better in hopes of being let out. I kept her home from school on Monday but she's gone the rest of the week. Steve has a "Spring Holiday" on Friday. It took us awhile to figure out that it's Good Friday. We want to wish all our friends who celebrate Easter a happy one.
On the Rainbow of Heroes front, we want to once again thank everyone for their generosity. We've raised almost $3,000! If anyone who has contributed has an employer who will match your donation, you can send the matching form to me and I will turn it into Duke. Thanks for all your support!
We hope everyone's having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill
Thursday , April 1, 2004 10:04 AM PST
Nickelodeon Music Awards Update...
The kids had a great time! Alex has loved shows since he was two, so he was taking it all in. He loved the huge cameras on big booms that swiveled around. He was happy when Hillary Duff won for favorite singer. Mary Kate and Ashley got slimed. YUCK! They kept saying they were going to slime some of the audience and Alex wasn't too thrilled so he put his hood up on his sweatshirt :-) Emily slept through the first half. It was so loud that we couldn't believe she was snoozing. She enjoyed the show after she woke up. It was a live filming, so at the end of the commercial break everyone counted down until we were on the air again. There were two musical performances and the kids liked that a lot too. All in all it was a fun time. Thanks to Jose for talking me into the tickets!
DAY 506
Hi Everyone -
Has a week gone by already? I don't know where the time goes! Last weekend was really nice here. It was in the high 80's. We cleaned up outside so we could picnic out there. The kids thought it was great until a bee came buzzing by. That had them running into the house, but they did eventually go back outside. On Tuesday, Steve and I went down to the beach. Unfortunately it had cooled off to the high 60's and we froze.
Yesterday was clinic day, and Alex just had labs drawn. His platelets are up a little to 32 and his hemoglobin is up to 10.9 That's the highest it's been post transplant. I'm not sure if I believe the number, but if it's still high next week, maybe it is real. Alex has had a lot more energy lately. The rest of his numbers look good too. His sodium is even in range. We go back next Wednesday for Zenopax.
I just got a call from the social worker at CHLA offering us four tickets to the Nickelodeon Awards show on Saturday. Alex says he would like to go and it was cleared by his doctors as long as he wears a mask. So, look for the masked bandit on Saturday at 8:00 p.m.! Alex really wants to see Hillary Duff. He's hoping that she will be there. Steve and I will have no clue who anyone is, but I always like to "people watch". I wonder if they'll let us take a camera in?
We want to thank everyone who has contributed to the Rainbow of Heroes Walk. We appreciate everyone's generosity. It's not too late to still contribute, so if you would like to support us, you still have time :-)
I hope everyone's having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!
Jill
Thursday, March 25, 2004 8:13 AM PST
************NEW PICTURES ADDED 3/26************
Hi Everyone -
Alex had his Zenopax yesterday and did well. His platelets were down to 24. The current plan is to go in next Wednesday and check counts. Dr. Kohn who was there yesterday said that Alex looks great. He commented that he has never seen Alex awake. He is usually sleeping from the Benadryl. Alex did take a Benadryl snooze, but I had to wake him up to move from the Day Hospital to the Clinic.
We had a fun day at Sea World on Monday. It was a lot more crowded than we would have liked, but so far so good. Steve says he will breathe a little easier this weekend if Alex is still doing o.k. The kids enjoyed the Shamu show as well as the Dolphin show. We saw the sharks, manatees, penguins, and the animals in the Wild Artic.
Emily must have missed going to school while we were gone. She was dressed and ready to go Tuesday morning at 6:45 a.m.! It was nice to get away, but it's good to be home. I couldn't even move on Tuesday. I feel a little more rested today.
Steve will get some pictures up when he has a chance. I'm computer illiterate or I'd do it.
We have another friend who is need of prayers. Baby Jordan was Life Lighted to Duke last weekend. He was in the room next to Alex during transplant. He was only 5 weeks old when he was transplanted. www.caringbridge.org/il/jordan Our friend Hannah has taken a turn for the worse and is inpatient. Spencer did it, he is in remission and will soon be on his way to Duke for transplant. Way to go Spencer! Please continue to keep these special kids in your prayers.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!
Jill
Sunday, March 21, 2004 6:42 PM PST
Hi Everyone -
Just wanted to let you know that we're having a great time in San Diego. The wedding was beautiful. It was on a bluff overlooking the Pacific Ocean. We all froze, but the setting was gorgeous. You could hear the waves crashing during the ceremony. Emily was adorable in her flower girl dress. We'll put a picture up when we get home. Steve looked great in his tux. Alex and I said he looked like an FBI agent.
We've enjoyed visiting with family that we haven't seen in a long time. We wish there was more time as we didn't have time to visit with a few cousins and we would have loved to hang out with them. We've been going non-stop since Friday morning, so we're exhausted, but it's a good exhausted :-)
Today a bunch of people went to see the seals in La Jolla. I asked how they were and was told LAZY! Apparently they were all sun bathing and weren't being playful. I went with Aunt Marilyn to the mall. We strolled around a bit and it was relaxing. Then we headed back to Richard and Kim's. They opened a few gifts, gave us a ton of left over food from the banquet and sent us on our way. We're going to hit Sea World tomorrow. It's been really overcast here which is good for Alex. It's not good for him to be in the sun.
Steve just told me to wrap this up since he wants to hit the hot tub. We hope everyone has a sunny week ahead. Thanks for checking in on us and don't forget to sign the guestbook!!!!!
Jill
p.s. - I really am 40!
Thursday, March 18, 2004 8:47 PM PST
Hi Everyone -
We've been very busy! Last Saturday we went out to my mom's to see Uncle Steve and Aunt Janet. They got engaged recently so there will be another wedding this year :-) On the way we stopped to get our hair done so we all look nice for Uncle Richard and Aunt Kim's wedding this weekend. On Sunday I went to a Spa Day from Chai Lifeline and had a manicure and a massage. They catered lunch and it was a fun day.
We had clinic yesterday and Alex's platelets have fallen to 41. While we would like to see them rise, we're thankful they're stable. Alex feels good, so we try not to worry too much!
We've been getting ready for our trip to San Diego. My mom is going with us and will help out with watching Alex at the activities that he can't go to. We're letting him go to the ceremony since it's outside, but not the reception since they are having 200 people. Alex will be able to go to the rehearsal and rehearsal dinner. We are also planning on going to Sea World on Monday. It's not crowded during the week. Alex is very excited about going away for a few days. I'm a little apprehensive about taking an immuno-suppressed child out in public, but we have our hand gel and masks, so hopefully everything will be o.k. We're looking forward to seeing relatives that we haven't seen in a long time.
Today is a big day for me. It's my b-day and it's a big one. My friend Debbie took me to breakfast and my friend Tamah took me for a pedicure. Steve worked from home so I could go out. Alex had physical therapy and his teacher today, so he was pretty busy.
A few of our friends are having a hard time right now. Our friend Spencer is heading for transplant at Duke and is now inpatient at Stanford. www.caringbridge.org/ca/spencerrocket
Our friend Hannah is outpatient right now, but is in the clinic a lot for transfusions. www.caringbridge.org/ca/hannahrowley If you can, please send prayers and thoughts for healing their way.
We hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!
Jill
Monday , March 8, 2004 10:57 PM PST
Day 482
******Check out the new pictures from Alex's party******
Hi Everyone -
Alex's platelets are up to 56!!! We're so happy to see this increase. He had his last weekly dose of Zenopax today and will start to get it every other week. We're going to go to clinic next week on Wednesday for IVIG and Pentamadine.
Steve worked all weekend on a research proposal so he's going to take tomorrow off and we're going to go down to the beach at Corona del Mar. Nana is going to stay with Alex. It's been really warm here. It was 99 degrees when we left CHLA today. It's *only* 88 here in Manhattan Beach. Alex is complaining that it's too hot. He gets itchy when it gets too warm.
Wednesday update...
Steve and I had a really relaxing day at the beach yesterday. I managed to get burned sitting under an umbrella!
Funny story for today... I gave Alex some eggs and he went to put pepper on them. Next thing I know he's gagging and screaming, "YUCK". He put nutmeg on them instead of pepper. They come in the same size container and he didn't look before he sprinkled it on. I don't think he will make that mistake again!
I hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill
Thursday, March 4, 2004 11:17 PM PST
Hi Everyone-
Here's the update you've been waiting for! Alex had a super time at his party. He and his friends played video games and ran around outside. They had pizza and cake and had fun grabbing all the candy from the piñata. The only little mishap was when Emily pulled a whole handful of strings instead of one string. Alex was not too happy with her. All the piñatas these days seem to have strings to pull to open a trap door. I couldn't find any that you can take a baseball bat to. Alex had a great time opening all of his presents. He got a lot of legos. As soon as he finished opening things, he and his friends started building the legos. Alex was so wiped out from his party that he was in bed by 7:30 p.m. I can't remember the last time he was in bed so early. He said it was a great day!
We've had a crazy week here. On Monday we left for clinic at 7 a.m. and Steve had to leave at 6 a.m. to go register Emily for Kindergarten. Some people were in line at 3 a.m. This is for the local public school! I think it's a stupid system and I found out that this is the only school in the district that has parents line up. All the other Elementary schools have a lottery. Steve was there for four hours! What a waste of time.
Thankfully Grandma stayed for a few extra days. She took Emily to school on Monday and did a presentation about Shabbat for the kids. Everyone thought it was great! Thanks, Grandma! Steve and I hadn't been able to get over there to do it since I can't take Alex with me and Steve has been working day and night on a research proposal. He was also in Berkeley for a few days last week for some meetings. His proposal is due Monday and hopefully things will slow down then :-)
On Tuesday my friend Linda came out since it was her last free day before going back to work today. We went shopping to continue with the re-decorating project. We're now working on the living room. Soon there won't be anything left to decorate! We also swapped some furniture. She gave me a bench for Emily's room and I gave her two upholstered chairs for Brooke's room. Now I want the mosaic table she has in her yard!!! Anyway, we had a fun day. I have a lot of things that need to find a new home after we re-decorated the living room, so that's keeping me busy.
We want to thank everyone who's sent in a check for the Rainbow of Heroes walk. We really appreciate your generosity!
I hope everyone has a great weekend! Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!
Jill
p.s. - Steve will get the b-day pictures up when he has a chance... I'm computer illiterate and don't know how to do it :-(
Tuesday, March 2, 2004 9:41 PM PST
Hi Everyone-
Just wanted to let you know that Alex's platelets were 35 on Monday. We would like to see a higher number, but at least they're stable.
Alex had a super birthday. I'll update and add pictures later this week or over the weekend. Our wireless hub croaked and I've been trying to hook my laptop up to the wall jack which requires me to have two cables going opposite directions while crossing over me. Alex and I got trapped under the wires earlier and I could just see the headlines...Mother and child strangled by wires while trying to use their computer....
Hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!
Jill
Monday, February 23, 2004 10:52 PM PST
Hi Everyone-
Alex's platelets have dropped again. They were 37 today. There are other drugs that they can give, but they would totally wipe out Alex's immune system and it's pretty low already. So, we're going to take a wait and see approach. Alex didn't take the news of his platelet count too well, so he went to talk to Dr. Katie, our favorite psychologist. I don't know what they talk about, but he always seems to perk up after a visit with her.
Alex's cold is finally better. He had a tissue the other day and kept wiping his nose. I was wondering what he was doing since there was nothing to wipe. He told me he got so used to wiping that he kept doing it. After a month of having a tissue practically attached to his nose, he didn't know what to do without one!
Birthday preparations are well under way. Alex would like a Power Ranger cake. The only problem is that Southern California grocery stores have been on strike since before Thanksgiving and almost all the bakeries are not taking cake orders. Thankfully after a few phone calls I found a Ralph's that can make a Power Ranger cake. Alex is thrilled.
Alex's excitement last week was riding around with Zakkai in the back of Tamah's van. The kids were happy playing their Gameboy's and we got to run into the Knit Store. On the way home, I wanted to stop for coffee and Tamah asked if Alex would mind. I told her that he would be happy driving around in circles all afternoon. Now we just need to find other places to drive to where the kids don't have to get out of the car and come into contact with germs.
Last week we had some seismic activity. The earthquake measured 2.8 and was centered one mile from here. Normally we wouldn't feel a quake so small, but I guess you really feel it when it's right under you. Alex was sleeping, but Emily was still awake. She had her feet on the wall, so she thought she caused the shaking. I told her it was an earthquake. She didn't say much until the next night when she didn't want to go to sleep for fear of another quake.
I think I need to start new column called, "Out of the mouths of babes". The other day Emily told me that when she and Alex grow up and have kids that Daddy and I will need to get new kids. Alex told her the new kids were called grandkids. Later that day I was eating a Luna Bar and Emily asked me if it was a Power Bar. Don't ask me where she came up with that! I told her it was and she told me that you eat Power Bars so you can climb rocks. So, she wanted to know when I was going rock climbing. I got a few good laughs that day, and I hope you do too :-)
I hope everyone's having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!
Jill
Monday, February 16, 2004 10:24 PM PST
Hi Everyone-
We had a very busy but very fun weekend. Our cousins who we hadn't seen in almost two years were in town. They stopped in for brunch and we caught up. Their kids are 10 and 13, so I wasn't sure how they would interact with mine, but they all had a blast. They didn't want to leave and my kids didn't want them to leave. After they left, we got ready for our next visitors. Our bridge playing pals came by for dessert. Alex and Emily had fun entertaining (or exhausting) Doug. Doug, Emily wants another piggy back ride :-)
Today, Brooke and Linda came over for a "Girl's Day Out" while Steve took Alex to the clinic. Brooke gave Emily her old bike and Steve put training wheels on it and the adventure seeker was off. She had a great time until she took a corner too fast and took a spill and got scraped up.
On the medical front Alex's platelets are up to 58! The tradeoff is that his immune system is wiped out. His sodium is very high and we need to be more diligent about sticking to the low salt diet. Alex is scheduled for another Zenopax treatment next Monday. He still has his cold but it's getting better. Hopefully it will be gone soon.
Alex is counting down the days until his Birthday. Lynne, we got the package today and it was a HUGE hit. Alex is already filling out the invitations. He's also thrilled with the party hats and blowers. Tell Claire she did a great job picking everything out! Thank you both so much.
I hope everyone has a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!
Jill
Wednesday, February 11, 2004 8:13 PM PST
*****New Pictures Added 2/11*****
Hi Everyone -
Alex's x-rays were normal. He still sounds horrible, so I called the doctor today and insisted that they try a different antibiotic for a few weeks. He needs to take Cipro for a year due to the immuno-suppression from the Zenopax. Cipro is a strong broad spectrum antibiotic, but it's not great with sinus or respiratory infections. I also think Alex has an ear infection. He's been complaining about his ear today. I think the new antibiotic (Biaxin) should help with that and we hope it gets rid of his cough and congestion.
We had a fun but tiring day at Disneyland yesterday. It was nice and sunny and in the mid-seventies. The energizer bunny kept going and going. Emily decided she likes roller coasters. She kept asking to go on again, and again and again. She dragged us from one ride to the next. She also had fun visiting with Mickey and Minnie Mouse and Winnie the Pooh, Tiger and Eyore in Toontown. Emily checked out the plumbing throughout the park. At last count we had stopped to potty ten times. I figure we spent a good hour in bathrooms! The kid sized sinks were a big hit :-)
Alex had a fun day with Nana and is thrilled with the Pirate sword we brought home. He hasn't put it down and even took it with us on our walk today. Emily kept saying she wished Alex could have come with us. She really missed her big brother. I commented that even if Alex was 100 percent healthy he couldn't have kept up with her. Steve and I had a hard time!
Steve is taking Alex to clinic on Monday since he has the day off. Alex is due for his IVIG and Pentaadine as well as dose #3 of the Zenopax. Linda and Brooke are going to come over and we're going to take the girls out to lunch.
I hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!
Jill
Tuesday, February 10, 2004 7:22 AM PST
Hi Everyone-
Alex's platelets are 11. We had hoped for a bigger rise, but Dr. K commented that at least they're stable. Alex had a chest and sinus x-ray, but I don't have the results back yet.
Steve and I are off to Disneyland with Emily today. Alex will have a fun day with Nana.
More later...
Jill
Friday, February 6, 2004 6:03 PM PST
Hi Everyone -
Alex still has his never ending cold. The doctors did say it would take him longer than the average bear to get rid of it due to his immune system not being 100%, but his poor little nose has been running for weeks. He still has a nasty sounding cough but they said it's in his upper airway and not in his lungs. They finally got the Adeno virus culture back and it's negative. Big sigh of relief here.
Steve left for Washington D.C. early Tuesday morning for a business trip. He had a 6 a.m. flight. I told him to tell his boss that was cruel and unusual punishment and he needed more stock options. He got home Thursday around 1 p.m. and is totally wiped out.
My friend and personal interior decorator Linda came over on Tuesday and we went out to lunch. She then moved a few things around in my house to make things look better. When Steve got home his comment was, " I see that things have moved around again, I guess Linda must have been here". It's amazing what moving a few objects around can do. I told Steve he should be thankful that she didn't move any furniture!
Grandma was going to come visit this weekend but she hasn't gotten over her cold, so she will come for Alex's birthday. Alex is so excited about his birthday. He will be 8 on the 29th. Yep, he's a leap year baby, so he is really only going to be 2 this year :-) We're having a Star Wars Party, but that's only because I couldn't find Power Ranger stuff. I'm sooooo glad he decided he didn't want Scooby Doo again. He had really hoped to have a "real" party with friends this year, but due to his immuno-suppression it's going to have to be limited to family. When his immune system is up and running at full speed, I told him he can have a party with lots of friends.
I hope everyone has a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!
Jill
Monday, February 2, 2004 6:23 PM PST
Hi Everyone -
We had a pretty good day at clinic. Alex had one of his favorite nurses today and she did a great job accessing his port. It's been hard to access since there is a lot of scare tissue there from repeated pokes. Alex joked that he wants to hire Effie. When Alex was on chemo and he had to go to the Day Hospital he would go check out which nurses were there that day and decide who he wanted to "hire". It usually depended on who gave him a shot that didn't hurt the previous week. If there was someone there that gave a bad shot he would "fire" them. Alex had 56 leg shots of chemo, so he "hired" and "fired" quite a few nurses. The nurses all love to joke around with Alex :-)
Alex's platelets were down to 9 today, so not much change from 10 last week. His hemoglobin was a little better at 9.3 today. We hope with the Zenopax that his hemoglobin rises as well as his platelets. We go back to clinic next Monday for dose number two of the Zenopax. The Zenopax is a 15 minute infusion and then they monitor Alex's blood pressure for one hour afterwards. Alex also gets IV Zofran (for nausea) and IV Benadryl and Tylenol to help prevent reactions. We're going to try to get Alex to take the Benadryl orally from now on. He won't take the Zofran orally since he has a psychosomatic response to it and vomits. Alex would take everything by IV if they would let him. He still thinks someone should come up with IV Tylenol. His Adeno culture was not back yet, and it's a good sign that nothing has grown yet.
Alex and Emily were running around the yard yesterday with squirt guns. He was being careful, but I was still a little paranoid about him running around with a low platelet count. We went to Nana's on Saturday and the kids had fun making a huge mess. Guess who got to clean it up??? Emily took a nap on Steve right before dinner and Alex said he was too tired to climb the stairs to help.
The weather man says a storm is coming our way. It is getting pretty dark, so we may get some much needed rain. My lawn could really use some water! I hope everyone's having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!
Jill
Thursday, January 29, 2004 7:12 PM PST
Hi Everyone -
Alex's platelets are a whopping 10. We need to wait until Monday to start the Zenopax since they ran a test for the Adeno virus and it needs to be negative in order to start the Zenopax. I don't know much about the Adeno virus except that it is very hard to treat. We're praying that Alex does not have this virus.
Alex is still coughing and his nose continues to run but he is congested at the same time. I can't give him decongestants since they all contain Sudafed and he can't have that since it will raise his blood pressure. A few people have suggested a patch that you put on the chest. I'll have to look into it. Alex says he feels o.k.,but he's been pretty cranky, so I know he really doesn't feel that good. Emily is on the mend and back at school.
Yesterday Alex was helping Emily snap something and he snapped his finger instead and it bled. With a platelet count of 10 we were very happy that it stopped bleeding. Alex doesn't slow down when he has low platelets, and he really does need to be careful. I think we might need to sedate him until Monday. :-)
Today Alex and I went to Toys R Us when they opened. He still had money from Chanukah and he knew I wouldn't let him go once he starts the Zenopax. He got a few things that will keep him busy for awhile. Lynne, I just ordered the Kids Concoctions book. I hope it helps with the boredom. Alex wants to make the volcano and Emily wants to make the lip gloss. I think it's going to be a hit.
I hope everyone is having a sunny week. Our bathing suit weather disappeared...it's been around 60 degrees here. It's been nice and sunny, so I can't complain when I know a lot of you are dealing with zero degree temperatures. You can always come visit sunny California! Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Friday, January 23, 2004 2:45 PM PST
Monday update...
We're going to go to clinic for counts on Wednesday and are scheduled to start the Zenopax next Monday. Alex and Emily aren't feeling great. Emily still has a 101 degree fever and slept a lot today. Alex didn't feel up to having his teacher come over today, but he did do his homework. For fun today I taught him to knit. He's been bugging me to teach him for some time. He was enjoying himself and said he's making a scarf for Freddie his stuffed turtle. We also played a little "21" today and Alex won a little money. We're on a quest to find something fun to do everyday without leaving our house. Fell free to send your ideas our way :-)
Sunday update...
Emily spiked a 102 degree fever yesterday. I met her pediatrician at the hospital this morning and she has a sinus infection. She started on antibiotics so hopefully they will kick in soon. Alex is coughing a lot and is more congested. We want to delay starting the Zenopax until he is feeling better so I'm going to call the doctor tomorrow. Having the kids sick is definitely raising my blood pressure!
Friday update...
Alex's ITP is back. His platelets are 18. They're going to treat it with Zenopax since that worked before. He will get weekly doses for the next three weeks then every other week for a month or two and then monthly for six to twelve months. The big bummer here is that Zenopax is very immuno-suppressive. Alex is pretty upset and who can blame him. He just wants to be a normal kid and do normal kid things like play with friends and go to school. I guess we continue to take one day at a time. Tune in next week for another exciting update.
We hope everyone has a sunny weekend. It's in the low 70's here. Nice and sunny, almost bathing suit weather. I think we'll have a backyard picnic this weekend. Can I rub it in anymore Pat??? Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill
Wednesday, January 21, 2004 4:54 PM PST
Hi Everyone -
Alex's cold is getting better. He woke up today and said he could breathe :-) He's still coughing a little, but his lungs are clear and it's not in his chest. His labs today were not good. His platelets plummeted to 17 (no that's not a typo) and his hemoglobin is down a little to 8.6 We're going back in on Friday to re-check his labs. The drop in platelets can be from the virus he has or from GvHD. I'm too drained to write more now, but I'll keep y'all updated.
Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Sunday, January 18, 2004 2:36 PM PST
**********CHECK THIS OUT***********
http://www.cnn.com/2004/HEALTH/01/12/blood.donations.reut/index.html
There is a critical shortage of blood right now. If you are able to, please donate NOW!!!
Hi Everyone -
It's been an interesting week. I felt pretty bad most of the week but I'm feeling much better today. While I was sick and totally out of it Emily came down with another cold and Steve was oblivious so Alex ended up catching it. He has a fever of 99.8 and is coughing a little. Dr. K said that I don't need to worry unless his temperature climbs to 101.5 He says he feels o.k. Emily doesn't seem to be bothered by her cold. Steve is the only healthy one around here!
We ended up starting Alex on hydrocortisone and within a few days he became an eating machine. He had a steroid moment when I wouldn't let him have anymore Crispix cereal late one evening. He grabbed the box and headed to his favorite place...under the kitchen table. He told me that he didn't care if I wouldn't get him a bowl, he was going to eat it anyway. Steve coaxed him out with a bowl. Alex was so proud of himself for eating the whole box of cereal in one day. At this point I e-mailed Dr. K going HELP, HELP, HELP! She told us to lower the hydrocortisone to half of what we were giving Alex. Hopefully we'll find the amount that is right for him soon.
My brother and Janet are here this weekend. We're going to go out to dinner tonight. Alex and Emily are so excited that Gavi will be babysitting for them. Tomorrow I'm taking Emily and Gavi to see the Disney Princesses on Ice show. They can't wait. Steve has the day off so he will stay and play with Alex.
We're going to clinic on Wednesday for labs. I'll update again later in the week. I hope everyone has a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!
Jill
Monday, January 12, 2004 8:43 PM PST
**********CHECK THIS OUT***********
http://www.cnn.com/2004/HEALTH/01/12/blood.donations.reut/index.html
There is a critical shortage of blood right now. If you are able to, please donate NOW!!!
Hi Everyone -
This is my third attempt to update today. My computer keeps crashing. Let's hope the third time is the charm! Today Alex is 14 months post-transplant. Not that I'm counting or anything :-) Steve took Alex to clinic today for his labs, IVIG and Pentamidine since I managed to get a cold. I hardly go anywhere and am so careful. Grr!!! Anyway, I'm currently in jail and hanging out in the bedroom.
Alex's platelets were down to 73 and his hemoglobin was down to 8.7 today so we have to go back next week for labs. Alex's sodium is still high but his kidney functions looked good today. His cortisol level (the body's own steroid) is very low since his adrenal gland isn't working right now. Dr. K wants to put him on hydrocortisone pills to replace the steroid Alex isn't making, but the doctors here don't want him on another steroid. I guess they'll have to hash this out. The background stress from this constant power struggle is really getting to us.
I found out last week that our friend Hannah relapsed for the third time. We are deeply saddened by this news as the doctors aren't giving them much hope. They could use all of our prayers and good thoughts right now. Hannah's web site is www.caringbridge.com/ca/hannahrowley
Sorry this isn't my usual upbeat update, but I'm not feeling really upbeat right now. I hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Sunday, January 4, 2004 10:10 PM PST
**************CHECK OUT THE NEW PICTURES**************
HAPPY 2004!!! We hope everyone had a fun New Year's celebration. We made it to our friend's Linda and Carl and Brooke's since everyone was healthy and we had a fun sleepover. Emily stayed in Brooke's room with her, Alex stayed in the guest room and we got Linda and Carl's room. They got the couch! I was joking that it was just like a hotel with turn down service and towels laid out. Linda said the only thing missing was the mint :-) We had a fun time eating, drinking and just hanging out. The kids had a fun time playing and running around like crazy people blowing their horns. I'm not sure I should have bought those LOUD noisemakers, but they sure had fun with them. We headed home after a scrumptious pancake breakfast New Years Day.
Monday it's back to work for Steve and back to school for Emily and Alex (at home). We really enjoyed the holidays this year. What a difference a year makes. Last year at this time Alex was a total couch potato and barely moving. This year he's running around having a grand time. We're so very thankful.
We have the week off from clinic and go back on the 12th. It's so exciting not to have to run to clinic this week. I keep asking Alex if he feels o.k. and he keeps telling me he's fine and to leave him alone. A mother's worrying never ends :-)
We hope everyone has a sunny week. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Tuesday, December 30, 2003 8:32 AM PST
Hi Everyone -
We went to clinic yesterday and were there for 3 1/2 hours for labs and a doctor visit. The only good thing was that traffic was light so it only took us about 35 minutes each way. Alex has lost 2 pounds and is not eating much. Dr. Kapoor told him he needs to re-train his body to eat at meal time and drink more. We'll have to work on it. His blood pressure was really good. I think the reduction in steroids is helping there. His platelets were up to 89 but his hemoglobin was only 9.0 His kidney functions are still elevated and his sodium is still high. His GvH rash is not under control, so we'll have to be more diligent with the steroid creams. Alex hates them since they're greasy. We're scheduled to go back in two weeks for Alex's IVIG and Pentamadine breathing treatment. Two weeks with no labs is a step in the right direction.
We're planning on going over to some friends for New Years eve and sleeping over. The kids are excited about it, so I hope everything works out. Alex wanted to camp out in the living room the other night. We were too tired to get all the sleeping bags and mats down from the attic, so we'll have to do a living room camp out another time. :-)
We hope everyone has enjoyed the Holiday season and we wish everyone a happy and HEALTHY 2004! Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Monday, December 22, 2003 9:30 PM PST
Hi Everyone -
Sorry I didn't get a chance to update over the weekend. We were pretty busy. We went to my mom's on Saturday to celebrate Chanukah. My brother and his girlfriend "Aunt Janet" drove down to be with us too. We all had a really fun time opening presents and eating latkes. The kids have been thrilled with their many presents. My house is being overrun with toys. We spent most of Sunday trying to put the house in some sort of order. I'm sad to say it's still a mess!
Thank you to chemo angels Babs and Carey for all the gifts. The kids are having fun finding the one with the correct date to open each night :- ) Thanks to Chanukah angels Chloe and Barbara for all the goodies too. We also want to thank all of the cousins, aunts and uncles and great aunts and uncles and the great, great aunt! (hope I'm not leaving anyone out) We thank you all for putting a smile on Alex and Emily's faces.
O.k., on to medical news. Alex's counts are pretty stable and we aren't going back to clinic until the 29th. Yep, that's 10 days! We are going to try to go to an every two week schedule if counts hold steady. Platelets were 80 and hemoglobin was 9.3 Sodium was a little high as were kidney functions, so Alex's job is to drink more. He's not eating much with the steroid reduction so we hope to see some weight loss soon. He gained 17 pounds from the steroids that were started back in July. He's down to 2 mg a day which is pretty low. We hope to continue weaning them, but he has been having a lot of skin GvH flare ups. It's controlled with a steroid cream, and is basically just a nuisance. He feels good and is really unhappy that he has no one to play with. It's been hard with vacation since all the kids in the neighborhood are out playing and he wants to join in the fun. I'd love to let him, but we need to be really careful since his immune functions are so low right now. We hope to have some play dates with healthy kids soon. It's so hard during cold and flu season.
Some of you may have heard about the earthquake that shook California today. I heard a thump and thought it was Alex. I guess something fell somewhere, but I didn't feel the quake. Steve called minutes later to ask if I felt it since his mini blinds in his office were swaying. I'm terrified of earthquakes, so I'm glad I didn't feel it!
We want to wish all our friends and family a Happy Hanukkah or Merry Christmas and a Happy and Healthy New Year. Thanks for checking in on us and don't forget to sign the guestbook.
Jill, Steve, Alex and Emily
Wednesday, December 17, 2003 9:38 PM PST
**********PICTURES #1 and #2 are NEW************
DAY 400
Hi Everyone -
We just got some great news. Alex has greater than 99 onor cells! Big sigh of relief here :-) His other tests won't be back for a few more weeks. He's feeling great and can't wait until Friday, the first night of Chanukah.
Last Sunday Emily went to a holiday party for siblings of kids with cancer that was hosted by the American Cancer Society. She went with her friend Gavi whose brother Zakkai is Alex's friend. Emily had a really fun time and volunteered to be in the magic show. Gavi said she was too cute. She came home with a new Barbie and a few other things so that made her day too.
Monday night Alex and Zakkai went to get their hair cut. The lady who cut their hair stayed after the shop closed so that there would be no one else there. It was so nice of her to do this for us. Check out the before and after pictures. Alex is happy with his hair cut, but he wishes his hair wouldn't curl.
Today Emily's preschool sung for everyone at an FAA event. They were pretty cute. Emily wasn't too sure about it, but she did a good job. Emily's big sister Chaya from Chai Lifeline came to visit today too. Emily couldn't wait for her visit.
I'll update again over the weekend to let everyone know how Alex's Friday labs are and what goodies the kids get for Chanukah.
I hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Friday, December 12, 2003 9:33 PM PST
*************CHECK OUT PICTURE #3*************
Hi Everyone -
We got a call yesterday telling us that Alex's MRI had been moved to 7:30 a.m. and that we needed to be at the hospital at 6:30 a.m. We think this is cruel and unusual punishment! I got up at 5:15 and woke Alex at 5:30. We were out the door at 5:45. It was a balmy 45 degrees when we walked out the door. Alex thought we should get our snow gear out...mittens, hats, and scarves. Since I was more likely to find a bathing suit than that stuff we just cranked the heat in the car and were nice and toasty warm in no time. The only *good* thing about leaving that early was NO TRAFFIC! We actually got to the hospital before sunrise. Alex said he felt like it was a middle of the night run to the ER.
Alex had his MRI and they weren't thrilled with me since I told them they couldn't do contrast. The radiologists always like contrast, but Alex doesn't! It makes him nauseous and he didn't need it. I really didn't feel like arguing at 6:30 in the morning, but a Mamma bear has to protect her cub :-)
Alex's hemoglobin is 8.9 and his platelets are 82. His kidney functions and sodium look good. We go back next Friday which is the first night of Chanukah, but it should be a quick visit for labs and a doctor visit.
I hope everyone has a sunny weekend and week ahead. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Monday, December 8, 2003 8:58 PM PST
********Picture #3 is new**********
Hi Everyone-
We made it down to San Diego yesterday, rain and all, to see Dr. K. We kidnapped her for a few hours and had some fun! We went to La Jolla and walked by the water and then we went into the Village and walked around there after getting some ice cream. Dr. K loves ice cream and Alex had a scoop of Vanilla, his first "real" ice cream since transplant. He was so happy and tolerated the lactose well. Dr. K said Alex looks great! We plan on going back to Duke at the beginning of May so we can once again participate in the Rainbow of Heroes Walk. We really enjoyed raising money for such a great cause, the family support program, and the walk was really fun too. We plan on meeting Isaiah and family there and hope to see some of our other transplant friends there as well :-)
Emily went to my mom's on Saturday. She still has a bit of a cold, but my mom needs to bring her home tomorrow. They went to see the Nutcracker ballet yesterday and today they were going to a luncheon. Emily has been busy getting into everything at my mom's. She got into the markers and painted herself. There is a reason I won't let my kids have markers! Alex used to do the same thing, so I did laugh, but only because I wasn't the one who had to clean her up. My mom said she had written her name all over her legs along with other drawings. Guess she saved a tree :-)
Today we went to the clinic for labs. Alex's hemoglobin is down a little to 8.7, but they'll re-check it on Friday. His platelets are 84, and holding steady. His kidney functions look good too. We decided to go in on Friday to get Alex's IVIG and Petamadine since he has an MRI of his brain scheduled at 2:30. By doing everything on one day it saves us an extra trip to the hospital. Luckily he was already scheduled in the Day Hospital for Friday and they had never taken him off the books. They said it's going to be a very busy day.
I hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill
Friday, December 5, 2003 10:13 AM PST
Hi Everyone -
Alex's hemoglobin was 9.5 and his platelets were 85. Normal for him, but not normal! Normal ranges for hemoglobin are 11.5 - 15.0 and normal range for platelets are 150 - 450. I think Monday's labs were inaccurate. I went so far as to suggest that they gave us the wrong labs! We go back to clinic on Monday for our weekly doctor visit. Alex's Pulmonary function test and Echocardiogram went well today. I think the results will be back next week. We're still waiting for them to schedule the MRI of his brain. These are all part of the one year tests they would have done at Duke had we made it there. We're going to go to San Diego on Sunday, but we need to figure out what to do with Emily since she came down with a cold.
Alex is happily marking off the days until Chanukah on his calendar and tells me each day that he's being so patient. Emily comes home from school every day and asks me if it's Chanukah. I guess you know what my kids have on their minds right now :-) I wrapped up some of the presents and being sneaky, I used bigger boxes for some things so Mr. Smarty Pants can't figure out what's inside. He is still convinced he knows, but I hate to break it to him that he's wrong. I remember endlessly shaking boxes as a kid and trying to figure out what's inside. I think that's half the fun of getting presents.
I hope everyone's having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!
Jill
Monday, December 1, 2003 8:17 PM PST
Hi Everyone -
Well, the roller coaster ride continues! Alex's platelets were up to 106, but his hemoglobin was down to 7.2 and his kidney functions were back up. Since we're going in on Thursday for Alex's echocardiogram and pulmonary function test they'll re-check his hemoglobin. If it's still low they have him scheduled for a transfusion. I have a hard time believing his hemoglobin is so low since he isn't symptomatic. He isn't tired and doesn't look pale. But, he did get a bit winded walking into the hospital today :-(
We had a really nice Thanksgiving meal. My mom cooked up a storm. She made so much food that we had enough left over for one dinner and two lunches for 6 people, and that's just from the food I took home. It was nice seeing everyone but there was more drama over the weekend than on a daily soap opera! I won't get into detail to protect the names of the *innocent*. Alex had a great time visiting with everyone and enjoyed the show :-) He also had lots of fun playing video games with Uncle Mike. The kids weren't sure who to climb on first. They aren't used to having so many people around.
I hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!
Wednesday, November 26, 2003 5:14 PM PST
HAPPY THANKSGIVING TO EVERYONE
This year we have a lot to be thankful for. Last year at this time Alex was in the hospital recovering from his transplant. Today he feels great and is running around and can't wait for the big feast with all of his family. We're so thankful for all of our family and friends, and doctors and nurses that have been there for us on this journey that can best be described as an emotional roller coaster. The ride's not over, but we're hanging on!
Steve took Alex in today for counts and they looked better than last Friday. His platelets were back up to 86 and his kidney functions were down a little. Next week we go in on Monday for his immune function testing that will be sent to Duke. It's vials and vials of blood! He is scheduled to get an Echocardiogram and Pulmonary Function test on Thursday. Next weekend we'll be heading down to San Diego to see Dr. K. She'll be there for a meeting and since it's only a 2 hour drive for us, we're happy to jump in the car to go see her. We might spend the night with Uncle Richard and Kim, but we'll see. It makes me nervous to be 2 hours from CHLA, but we would have a hem-onc doctor in the house :-)
I'm so saddened to tell you that Tommy lost his battle against Sanfilippo Tuesday. He had three transplants. The first two transplants were unsuccessful, but the last one worked. However, he died from complications. We met Tommy and his family during his first transplant when he was a cell mate with Alex on 5200. Alex says Tommy was so brave to have three transplants. We will miss Tommy's smiling face. I still have visions of Tommy running the halls in clinic. He was always so full of energy. You can read about his story at www.caringbridge.com/ca/bennetboys There was also an article in the L.A. Times today. You can go to www.latimes.com/bennett , but you have to register (it's free) to view the story.
I hope everyone has a fun and safe holiday weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!
Jill
Saturday, November 22, 2003 8:27 PM PST
Hi Everyone -
Alex had his last dose of Zenapax yesterday. His labs were a little off. His platelets dropped to 72 and his kidney functions were high. We had hoped to not go back to clinic until December 1, but we will need to go back in on Wednesday. Alex also had a bit of a skin flare up of GvHD but the topical steroids should take care of that. Dr. Kapoor told Alex to tell his cells to calm down!
We're looking forward to seeing all of our family next week for Thanksgiving. Grandma, Uncle Mike, Uncle Richard and his fiancé Kim, and Uncle Steve and his girlfriend Janet will all be in town. We're all heading over to Nana's for the feast. She is already busy cooking :-)
Hope everyone is having a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!
Jill
p.s. - my computer crashed last week and there were a few messages that I couldn't get to. If you didn't hear from me that's the reason.
Monday, November 17, 2003 8:04 PM PST
***CHECK OUT NEW PICTURES***
Hi Everyone -
Sorry I haven't updated sooner. Steve has been sick for a week and I have been going crazy being both mom and dad. I sure don't know how single parents do it! Steve enters the house with a mask and is banished to the bedroom. He said he feels like he is on travel stuck in a hotel room. The good news is (knock on wood) that the rest of us haven't caught his cold.
Alex's platelets were up to 92 last Friday and he is feeling great. We go back this Friday for his 6th dose of Zenapax. We took muffins to clinic to celebrate Alex's re-birthday. Everyone loved their morning snack :-)
Emily went to my mom's Sunday night. My mom took her to a children's concert today and she had a great time. Apparently the performers were talking to some of the kids before the show and they spoke to Emily. During the show they asked her to raise her hand and they sung to her. My mom said she was just mesmerized. I bought tickets to Disney's Princess Stories on Ice for January and am going to take Emily and my friend Tamah's daughter Gavi. I actually can't wait, I've always wanted to go to an ice show.
I've been getting out of the house a little more and it has certainly helped my mood. I've even shocked a few people with a phone call :-) Thanks to all my friends for putting up with me!
I hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!
Jill
Wednesday, November 12, 2003 7:47 AM PST
Day +365 HAPPY FIRST RE-BIRTHDAY ALEX!!!
One year ago today Alex was given a second chance at life thanks to a mom who donated her son's umbilical cord at birth. Unlike bone marrow donors, we will never know who this person is to let her know that her thoughtfulness saved a life. I wish I could say that Alex is off all meds, but he still takes 8 different medications a day...20 pills and 16cc's of liquid meds. He feels great and can't wait to be able to go out of the house without a mask, go to school, eat out at a restaurant, go to the mall and the grocery store. All of the little things most of us take for granted. We still have weekly clinic visits and sometimes we have to go more than once a week BUT, Alex is in remission and feels great so we're very thankful.
This journey has not been easy and there have been so many bumps in the road. Alex meets each new challenge head-on. He asks the doctors lots of questions so that he can try to understand what's going on with his body. This knowledge helps him to be brave and strong. One of the doctors asked him a few weeks ago when she should award him his M.D. Everyone he meets is always amazed with his understanding of what is going on with his body.
Along the way, we have made some good friends whose kids are dealing with cancer or genetic diseases and their only hope of survival is a transplant. We have been able to share our frustrations over the never ending days in the hospital or clinic and our fears of dealing with the life-threatening issues that come out of nowhere. We have met so many kids that battled valiantly only to become angels. We will never forget these kids and their families and the courageous battles they fought.
A huge thank-you to our family and friends that have stuck by us during the last few years. Your love and support has helped to get us through the most stressful times. We love you. Please continue to pray and send good thoughts for Alex's continued health and healing. The battle is not over!
Jill, Steve, Alex and Emily
Saturday, November 8, 2003 8:54 PM PST
***CHECK OUT THE HALLOWEEN PICTURES***
Alex had an uneventful clinic visit yesterday. His platelets are up to 69! We would have liked to see them higher, but they're going in the right direction. We go back next Friday for his 5th of 6 doses of the Zenapax. He also needs his IVIG and Pentamadine so it will be a long day. I got a call last week from the BMT nurse telling me that the Zenapax is doing its job and has wiped out Alex's immune system. She said they won't do immune functions again until a month or two after the last dose since there is nothing left to measure. Because of Alex's lack of immune function we have decided to postpone our trip to Duke. We will do Alex's one year studies here and send some blood off to Dr. K. I'm not sure when we will re-schedule for at this point. I told Steve I'd love to go in May for the Rainbow of Heroes Walk. However, I'm sure Dr. K is going to want to see Alex before then. We are going to miss seeing a lot of people we had planned to see on this trip, but hope to meet up with everyone sometime in the future!
We went out to my mom's today for a change of scenery. The kids always have a fun time there. Emily wanted to go swimming, but the pool isn't heated. She walked into my room this morning with her bathing suit and sunglasses on carrying her Barbie radio. She proceeded to dance for awhile. It was too cute. She had a fun time at Gymnastics class this morning. There have only been two or three kids in her class so she's gotten a lot of attention. Today she did a flip on the bar and of course thought it was great fun!
Some of you have asked how Alex is doing in school. His teacher comes 5 hours a week and he is doing really well and is keeping up with his 1st grade class. His reading is coming along and he loves Math. He isn't too thrilled with writing. We got the results of his cognitive testing and everyone was really pleased with the results. His vocabulary is as good as someone who is ten to twelve years old and he's only 7! Alex's teacher also teaches piano, so we bought a small keyboard with a stand and she is going to give Alex piano lessons. He is just thrilled and is having so much fun with his new keyboard. Emily loves the keyboard too, but she likes to bang on it so we have to keep reminding her to be gentle with the keys. The biggest problem I have is no place to put the keyboard in my small house.
I hope everyone is having a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!
Jill
Saturday, November 1, 2003 11:03 PM PST
HAPPY HALLOWEEN!!! *** CHECK OUT THE NEW PICTURES***
We hope everyone had a safe Halloween. Alex was a Wizard, Emily was a Barbie cat and I was a doctor. Alex made it around the block and wanted to go home. At this point it started raining, so we headed in. Emily, the energizer bunny wanted to keep going. The rain let up about a half hour later and I took her out for another hour! She kept saying, "one more house". She was so cute and was having so much fun that I couldn't refuse her.
Alex had a fun time at clinic handing out candy to the doctors and nurses and other staff. Everyone loved his costume. A lot of the adults were dressed up and Alex got a kick out of that even if we couldn't figure out what some of them were :-) Jed, you win the costume contest hands down!
Alex's platelets are up to 62!!! We don't go back until next Friday. He feels great and is adjusting well to the fact that he is going to be isolated longer than planned. Dr. Katie, the psychologist at CHLA who we love stopped by to talk to us. It was nice to be able to have my feelings validated. I don't tend to share the emotional part of this journey, but I've been having a hard time dealing with this current bump in the road. As one year post transplant is approaching, I thought things would start to get back to *normal*. Now we're back to total isolation and it's hard. I know those who haven't walked in my shoes may have a hard time understanding what I'm feeling, but I'm glad that others don't have a reason to understand. I haven't had the energy, mentally or physically, to return phone calls lately. I'm sorry if some of you have a problem with that, but I'm just plain worn out. It's not that I don't think about you, it's just that I don't have the energy to pick up the phone and call. But, please keep trying to get me. I do answer the phone on occasion :-)
I hope everyone is having a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!
Wednesday, October 29, 2003 6:01 PM PST
Hi everyone-
We had an uneventful clinic visit on Monday. Alex slept almost the whole time we were there compliments of Benadryl. He was thrilled to wake up and find out he was almost done. His platelets were up to 52! That's the highest they've been in months. We're hoping they continue to rise. Alex's hemoglobin was down to 8.9 which has us a little concerned but Dr. K said not to worry about it at this point. Easier said than done. His sodium is in the normal range, but we still need to watch his salt intake. If anyone has any suggestions for low salt food, Alex would love to hear from you.
When we got home Monday I was tired and I was slicing some bread and ended up slicing my finger. It was a pretty deep cut but I did get the bleeding to stop. It was gushing so much that I almost fainted. It was a good thing Steve was home. I'm fine with blood as long as it isn't mine! Alex thought it was hilarious but he says he's glad I didn't slice my whole finger off. Steve went out and got me some of these new bandages that are water-proof and you leave them on for a few days at a time.
Alex and Emily tried on their Halloween costumes for Nana last night. They were just too cute. I'll have to take some pictures and put them up this weekend. Alex looks great in his Wizard costume and Emily is going to be a pink Barbie cat. Thank you to everyone who has sent Halloween goodies to the kids. I think we've gotten more than one package everyday this week!
I hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!
Jill
Thursday, October 23, 2003 1 2:20 PM PDT
Friday's update...
We got to the hospital at 3:30 yesterday afternoon and were up on the unit by 4:00. The orders for the Zenapax weren't written until 6:00, the nurses changed shifts at 7:00, and Alex got the Zenapax at midnight. He was released today at 11:45 a.m. and had some nausea and vomiting when he got home. He is feeling better now and his friend Zakkai is on his way over to visit. Alex says he has to have Zofran (anti-nausea drug) on Monday. I'm sure we can arrange that. We go in for the Zenapax on Monday and Friday next week.
Aunt Marilyn is going to be in town for about 24 hours this weekend and we hope to see her. Alex wanted cousin Dan to come visit and play video games last night but he and Julia just got a new puppy and he couldn't leave his "baby". He thinks it is a lot of work to have a puppy. I told him it's great training before they have kids!
Thursday update...
It has been a crazy few days around here. We have been trying to get insurance approval for the Zenapax and there were some problems with our insurance company's computers and voice mail. It was finally approved this morning with the stipulation that Alex stay overnight in the hospital. Of course we aren't thrilled with this development but will do what we have to do to get Alex the medicine he needs. We'll be going in this afternoon and they will release us tomorrow morning.
I spoke with American Airlines today and they told me the good news is that we can use the tickets we have for one year. The bad news is they won't waive the $100 per ticket change fee. If anyone has any connections at American and can get this waived for us when we are able to travel please let me know.
The kids are looking forward to Halloween next week. Alex is going to be a Wizard and Emily hasn't decided yet. She is thinking about being a Princess, Ballerina, or a butterfly. This will be the first year in two years that the kids can go out on Halloween. Emily will be able to trick-or-treat at preschool and Alex will be able to trick-or-treat at the clinic as well as going around our neighborhood in the evening. They are talking about filling their treat bags to the top!
I hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!
Jill
Monday, October 20, 2003 3:45 PM PDT
Hi Everyone-
We didn't get the news we wanted today. Alex's platelets are down to 34 and he's really bummed we won't be going to Florida. He's going to start a new drug on Thursday called Zenapax. They'll give it on Thursday, Monday, Friday and the following three Friday's. The down side of this drug is that it causes immuno-suppression. Alex will be at greater risk for developing viral and fungal infections so we'll have to be really careful. Dr. K says it will be months before things are resolved but we are thankful that Alex is in remission and doing so well. We just wish he didn't have to battle chronic GvHD which is causing his platelet problems.
Hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Tuesday, October 14, 2003 6:59 PM PDT
Hi Everyone-
Sunday was eleven months post transplant. It's hard to believe that so much time has passed since the big day. Some of you have asked when things will get back to normal and I can't answer that since I don't even know what normal is anymore. Alex's immune functions are increasing and we hope when we go back to Duke next month that some of his restrictions will be lifted. Alex is a pretty happy kid but he would love to go to school and do normal kid things. We'll let him loose when the doctors say it's o.k. to do so.
Alex went in for his high dose IVIG yesterday and today. Yesterday we were at clinic for 9 1/2 hours for the 6 hour infusion. Today we were there for 6 hours and they ran the IVIG over 4 1/2 hours. Yesterday Alex felt fine but today he was nauseated and had a headache. I gave him more Benadryl and Tylenol when we got home and he is fine now. Headaches are common with high dose IVIG and we hope they are now gone.
Alex is doing the happy platelet dance here. Last week his platelets were 23. Yesterday they were 33 and today they were 42. They need to be above 50 to go to Florida. Alex is certain they will be high enough and wants to start packing. Dr. Shah told him that considering how much stuff we bring for one visit that we better start packing now :-) We're going back to check counts on Monday.
Yesterday was Columbus Day and Emily had no school. Our friend Keri who was Alex's Kindergarten home teacher took Emily for the day. Emily had a blast going to the movies and the park and out to lunch. She was so worn out that she fell asleep at 7:15! She always has fun with Keri and kept asking when she was going to go. Steve said when Keri got here Emily was already half way out the door. Thanks Keri for always being there when we need you.
Alex has home school the rest of the week and we might try to go to a movie mid-day if it isn't crowded. Alex will still have to wear his mask, but he's excited. He wants to see Spy Kids 3D or Pirates of the Caribbean if they're still playing. Since I haven't looked in a calendar section in so long I have absolutely no idea. I'll have to check on-line later to see what's playing in our neck of the woods.
Hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook. We truly appreciate all the entries!
Jill
Wednesday, October 8, 2003 3:50 PM PDT
***PICTURES 2 AND 3 ARE NEW***
Hi Everyone-
Alex had a doctor appointment today and they drew labs. His platelets are holding steady but are still low at 23. They are going to give him the high dose IVIG on Monday and Tuesday next week. It will be a couple of long days in the day hospital. They need to infuse the IVIG over 6 to 8 hours and this doesn't include any premeds. The doctors feel that if this works it will only be a temporary fix. They said if his platelets come up we can go to Florida and deal with the platelets when we return. Alex says he is o.k. with not going now as long as we can go when his platelets are high enough.
Alex also had his yearly neuropsych testing done today. They do this testing once a year since he had a LOT of cranial radiation. If there are any learning problems, they want to nip them in the bud. They also want to see how Alex learns and his strengths and weaknesses. He has always enjoyed these evaluations and today was no different. The doctor that did the tests said he had her cracking up and she had him cracking up. We should have the results in a few weeks.
Yesterday Alex's big toe kept bleeding on and off all day. They want me to have a topical I can use at home to stop bleeding "just in case". We were having a hard time finding the topical because it is something that is normally only used in hospitals. The compounding pharmacy that we go to will be able to get it tomorrow. Anyway, we saw Dr. Tishler, (Alex's oncologist before he relapsed) and he asked what we were looking for. He then told me that Salt Pork will stop bleeding. I just laughed. Well, he brings me an article from Hemophilia Daily about Salt Pork. It's really funny. It talks about using the pork for nose bleeds. They make plugs out of the pork and stuff them in the nostrils. Apparently the body heat melts some of the fat so that the plugs shrink so there is no bleeding when they are removed. Hope I didn't gross anyone out. I find this hilarious, but I think I may have a warped sense of humor after all we've been through :-)
I hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!
Jill
p.s. - Alex got over his cold in two days but Emily is still getting over it!
Wednesday, October 1, 2003 9:52 PM PDT
Hi Everyone-
I was going to update on Monday but our internet service was down. On Sunday Emily woke up with a cold. We've been trying to keep her and Alex apart but today Alex woke up with a runny nose and it has been running ever since. Today Alex went to clinic for labs and a doctor visit. His platelets are down to 24. Dr. K called one of the doctors at CHLA and they decided they will give him high dose IVIG on the 15th and 16th to try to raise his platelets. If this doesn't work they will use another drug called Zenapax which is given in six doses on Days 1,4,8,15,22 and 29. If he has to have the Zenapax we will have to postpone our trip to Florida since his platelets will be too low for us to travel and he will also be more immuno-suppressed than he is now. I have to say that I'm upset with this setback. I came home and told Steve I needed a punching bag. He put his hands up and said, " Don't use me!" Babs, I need to get my "dammit" doll out :-) So, I guess we hang out and wait and see what happens next week. There is still a slim chance that the Rituxin Alex had will start to work.
Last weekend was the Jewish New Year. We had a nice family celebration but it wasn't the same without Nana. My mom went to my brother's for the holiday and they all had a great time. My cousin's Laurie and Nic went as well. We sure wish we could have been there. Shanah Tovah to all our family and friends!
I hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill
Monday, September 22, 2003 10:35 PM PDT
Hi Everyone-
We had a nice weekend. Saturday Emily started her gymnastics class and loved it. There were only two other kids in the class so I hope they don't cancel it. On Sunday Uncle Richard and Kim drove up for a quick visit and it was great to see them. We realized that we hadn't seen them since the beginning of June when they brought us our stuff that they had lugged home from North Carolina.
Today was the first clinic day of the week and it went pretty smoothly. Alex got his Pentamadine and his IVIG. I was concerned that he got the wrong brand of IVIG since it didn't say what it normally says on the bottle. The nurse double checked with the pharmacist who said it was the right stuff. I'm still not convinced and I ran into one of the BMT doctors who said as long as he didn't have a reaction (he didn't) than it's o.k. I'd still like to know if he got the right brand. If you switch brands of IVIG you can have severe reactions. Alex decided that they should leave his port accessed until Wednesday so that they don't have to poke him again. He does really well with getting accessed and doesn't use anything to numb the area. The doctor was in the room when the nurse accessed him today and he put his hands over his ears because he expected to hear screams. Alex never makes a peep. He quietly counts to four and they put the needle in. The doctor told Alex he is one brave kid!
Alex's platelets were only 28 today. Not what we wanted to see. His body is still making antibodies and it can take a month or more for the Rituxin to work. He gets his last dose on Wednesday. Alex's low sodium diet and Diuril have helped his sodium level and it is now back in the normal range! He needs to continue on the low sodium diet but is doing o.k. with it. The only thing he can't have that he really wants is pizza.
Today is Alex's transplant friend Isaiah's 8th birthday. You can drop by and send him birthday wishes at www.caringbridge.org/mi/isaiah Emily thinks we should go to Isaiah's party and wants to know why we can't get on a plane to go. Happy, Happy Birthday Isaiah. We miss you!!!
Hope everyone has a sunny week. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Thursday, September 18, 2003 2:02 PM PDT
Hi Everyone-
I don't even know where to begin. We've been so busy! We had to go back to CHLA last Friday for a re-check on Alex's sodium level since it was getting too high. It is still high, so he is on a low sodium diet. He is looking at box labels and figuring out what he can eat. He is allowed about 1,500 mg a day of sodium and that isn't much. I don't add salt to anything and it amazes me how much salt is in everything we eat. I had never looked at labels before since it wasn't a problem.
Grandma came to visit on Saturday and left Tuesday morning. We had a fun visit. I had a lot of errands and appointments so I feel like I haven't been home. Yesterday was clinic again and Alex got his Rituxin. His platelets are hanging out at 30. Still really low, but we're hopeful the treatment will boost them. While we were at clinic I was asking about tickets to Sea World since Dr. K told Alex he could go. They had no tickets for September and I said October would be fine. They then asked if I'd like four free tickets on American Airlines for a family vacation. My mouth just hung open. Fox studios donated 40 tickets to CHLA and we got 4 of them! Talk about being at the right place at the right time. The only catch is that travel has to be completed by October 31st. Alex's first choice of destinations was Colorado to visit Auntie Lynda and Uncle Howard, but he can't go anywhere above 5,000 feet. We would have loved going to Colorado...to bad they can't lower it to sea level :-) Alex's next choice was going back to Florida, so it looks like we'll be heading to Orlando the last week of October. Dr. K approved this since everything is outdoors. She told us to wear sunscreen, hats, and to stay of the Tower of Terror and roller coasters. Since Alex hates roller coasters and I don't know what the Tower of Terror is, I think we're o.k. Alex still has to wear his mask and wash his hands, etc, etc., but he is thrilled. We will be able to get a one day pass to visit Give Kids the World where he went on his wish trip last year.
Today when I was getting ready to take Emily to preschool they called and said one of the teachers is now out with the stomach flu and 102 degree fever thing that has been going around. They suggested I keep Emily out today and tomorrow. She started crying since she really loves school and wanted to go. I feel so bad but I don't feel that we can take the chance of her getting this nasty bug that seems to last for 5-7 days. My friend pointed out that if she got it she couldn't go to school anyway. This is all hard for a four year old to understand. If it was the common cold going around I wouldn't worry so much, but a fever lands Alex in the hospital. Hopefully by next week the germs will have passed and she can return to play with her new friends.
Richard and Kim are coming up this weekend. We were going to go to San Diego to see them, but Alex has clinic on Monday and Wednesday next week. We had told him that when we went to San Diego he could go to Sea World. On Monday he gets his IVIG and Pentamadine and on Wednesday he gets his last dose of Rituxin. Hopefully clinic visits will then slow down and be quick!
I hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill
Thursday ,September 11, 2003 10:36 PM PDT
Hi Everyone-
Friday will be ten months post transplant. Alex went to the clinic Wednesday for his second Rituxin treatment. Thanks to Zofran (anti-nausea drug) he did fine. We did have a long day though. We left home at 8 a.m. and didn't get home until 5 p.m. His sodium level is too high, so we are going to have it rechecked on Friday. Wednesday evening's excitement occurred when Steve noticed that Alex had a blood spot or two on his shirt. Apparently the site where they took the needle out of his port had started bleeding. After ten minutes of pressure it clotted. Platelets cause the blood to clot so if you don't have a lot of them it can take a while for the blood to clot. Alex's platelets were 32. Remember that the low end of normal is 150!
Emily started preschool Wednesday and had a fun time playing with all her new friends. I know she was busy since she came home totally filthy. Alex gave Emily some pointers about what to expect at preschool. He also told her not to be stubborn because she would get a time-out. It was hilarious listening to their conversation.
Steve and I had a great few days away. It was so clear at night in Santa Barbara that we could see the full moon, Mars, and lots of stars. We found a beach that had 240 steps down to it. It was gorgeous but my calves are killing me. We went half way down to check it out and then went back to get our stuff and went down and up again. Steve is amused that my calves hurt and his don't since I'm the one who is always exercising.
I hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill
Friday, September 5, 2003 9:37 PM EDT
Hi Everyone-
I thought I'd share the "tooth" story with you. Alex has had a loose tooth for awhile. We were concerned that it would bleed a lot when it fell out since his platelets are so low. Well last weekend, Alex was eating some toast when he noticed that something was in it. He spit it out and Steve being half asleep threw it out. That night while brushing his teeth Alex noticed that the tooth was gone! I was happy that it obviously didn't bleed a lot but Alex was upset that the tooth got thrown out. He was worried that the tooth fairy wouldn't come. He wrote a very nice note to the tooth fairy telling her what had happened and guess what??? The tooth fairy left him two dollars :-)
We've had a pretty uneventful week which is good around here. Alex has been working with his teacher and doing his homework. He isn't thrilled with the homework concept but I'm sure he will get used to it.
Steve and I are heading to Santa Barbara this weekend. My mom is going to watch the kids. This trip is a result of a meltdown I had a few weeks ago. I was upset since Alex was eating me out of house and home and the clean-up never stopped. I have a 24/7 job, and don't even get the weekend off! I think some R & R will do everyone some good and the kids are excited about going to Nana's.
Next week Emily starts preschool on Wednesday and Alex and I head off to the clinic for his second dose of Rituxin. I just heard from Dr. K and Alex still has greater than 99% donor cells!!! The other tests aren't back yet, but I'll keep y'all posted.
I hope everyone has a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill
Tuesday, September 2, 2003 9:17 PM PDT
Hi Everyone-
***Picture 2 was added today***
Alex got his Rituximab IV yesterday. About 15 minutes into the infusion he started vomiting. They gave him some Zofran and he fell asleep shortly thereafter. We were at the hospital for 8 hours for the 3 hour infusion plus one hour of observation. He had everyone looking for his Paper Mario video game. His nurse finally found it for him and he was a happy camper. He was also happy with his mac and cheese until he saw it again!
Sunday night we had a BBQ with cousins Dan, Julia and Andrew. Emily had everyone pushing her on the swing and Alex liked hanging out. Alex thought it was cool to meet Andrew since he had a bone marrow transplant 10 years ago at Duke. Dan is trying to convince him to move out here from NY, so hopefully we'll see more of him in the future.
Alex starts school tomorrow. His teacher will come 5 hours a week. We decided that Alex should repeat first grade since he has missed so much school in the last two years. He is doing really well but he hasn't been exposed to a lot of the material that they cover in first grade. Since he is feeling pretty good, we hope that he can get a good solid foundation this year so that he will be able to do well in school in the future.
I had to have more dental work done today. Yuck! Apparently I've been grinding my teeth a lot and I managed to crack a tooth. The crown I just had replaced was needed due to my grinding as well. I had impressions taken for a mouth guard to wear at night. Hopefully this will help with the problem. This is getting expensive!
I hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Wednesday, August 27, 2003 9:18 PM PDT
Friday update...
Hi Everyone-
We've had a change in plans as far as how Alex's new medicine will be administered. He needs to be admitted to receive the medicine in the hospital. They run the first dose over four hours and will watch him closely for adverse side effects. They have scheduled it for Monday. The good news is that if he doesn't have a reaction to it he can go home late in the afternoon. Alex says it's o.k. with him since he can order his mac and cheese and play video games.
For those of you who are up late tonight, Dr. Kurtzberg is going to be on 20/20 on ABC at 10:00 p.m. I don't know what the segment is about but I'm sure it will be interesting.
As always, thanks for checking in on us. I hope everyone has a sunny weekend. Don't forget to sign the guestbook!!!
Wednesday update...
We're home from Duke. We had a short but good visit. Alex said there wasn't enough time to spend with his friend Isaiah. We survived the heat, humidity, and bugs. It was so humid this morning that when I got out of the car my glasses fogged up. That's definitely a first! We somehow managed to avoid being eaten alive by mosquitoes. They usually feast on me so everyone else is safe :-)
So, the good news is that Alex can keep his spleen for the moment. When we got to Duke we had visions of a spleenectomy, but Alex's spleen is half the size it was the last time they did an ultrasound of it which is good. The bad news is that an antibody test confirmed that he has ITP. He has developed an antibody that causes his immune system to attack his platelets. He says that his spleen is hungry for lunch and going munch, munch. Basically his B cells aren't behaving and are telling his spleen to gobble up his platelets. They are going to put him on an IV drug once a week for a month or so to try to control the naughty B cells. If this doesn't work Dr. K has something else up her sleeve. ITP is treatable, but it can last for a few months or a year. We are going to wean Alex's steroids to half of what he is now taking. Hopefully that will cause Steroid Boy to stop eating continuously. He has now gained over 10 pounds in the last month! Alex's other tests looked great. His pulmonary function (lung) tests were over 100 The bone marrow fellow told us that his tests are better than hers! By yesterday afternoon Alex and I were pretty tired from running all over the place for his tests.
We were able to visit with cousins Howard and Sandy on Sunday. Thanks for the great dinner! We had dinner with Pat and Isaiah on Monday and then headed to our favorite ice cream place. We briefly saw a few other friends and missed a few who we would have liked to see.
The bone marrow transplant unit got a face lift while we were gone. It looked really nice. We handed out beanie babies that were donated to us to all the kids on the unit. All the nurses loved seeing Alex with all his hair. Everyone wanted to touch his head. He was getting pretty sick of being petted like a dog.
So, we get one day to rest up and then it's off to CHLA on Friday morning. I'll update again over the weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!
Jill
Friday, August 22, 2003 9:20 PM PDT
Hi Everyone-
Just a quick update. Our clinic visit went really smoothly thanks to one of our favorite nurses. Thanks Annie! Alex got his IVIG, his platelets and his pentamadine. We were at clinic from 8:30 a.m. until 3:00 p.m., but it could have been much worse. They originally told us that they wouldn't have any platelets until 3:00. There is still a nationwide shortage of platelets, so please donate if you can.
Alex's platelets were down to 28 today. It's still a mystery and one we hope Dr. K can solve. She is going to do an ultrasound of Alex's spleen to see what is going on there. I spoke with my friend Pat tonight who we are meeting up with at Duke and I asked her if she knew the treatment if the spleen was involved. Then I decided I didn't want to think about it since we know of a few kids who have had to have their spleen removed. I'm hoping that Alex's spleen is not the problem.
So, we are off to Duke in the morning. We're looking forward to seeing our family and friends in NC but we aren't looking forward to the humidity and bugs. I'm a CA kid and am just not used to things like bugs and weather!
Hope everyone has a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook!!! I'm not sure if I'll find computer access so you might not hear from me for awhile.
Jill
Tuesday, August 19, 2003 5:15 PM PDT
DAY +280
Hi Everyone-
Just wanted to let you know that we put some new pictures up. Pictures one and three are new :-)
We had a nice weekend and have a pretty busy week getting ready for our trip to Duke. We can't wait to see our friends Isaiah and Pat, we miss them so much. We will also get to visit with cousins Sandy and Howard and their cute dog Pisher. Between visits there are tests, tests, and more tests. Alex is scheduled to have an Echocardiogram, Pulmonary Function Test, Eye exam, chest x-ray, Audiology testing, an MRI, and lots of tubes of blood drawn for testing. We have a doctor appointment on Tuesday with Dr. K as well as a meeting on Wednesday before we head to the airport to discuss the results of some of the tests. We're hoping that she can figure out what is going on with Alex's platelets. They can do an antibody test at Duke that they can't do here to see if Alex is making an antibody that is eating his platelets.
We are going to CHLA on Friday for Alex's IVIG, Platelets and Pentamadine breathing treatment. Friday will mark 2 years since Alex was diagnosed with leukemia and almost one year since he relapsed. It is hard to put into words all the thoughts and feelings swirling around in my head. I want to scream and cry because of what my child and family had to go through the last two years, but I also want to rejoice because Alex is still among the living. We have seen too many kids become angels on this journey.
We couldn't have made it through the last two years without the support of our family and friends. We appreciate all of you!!! We also want to thank all the doctors and nurses at both CHLA and at Duke for taking such good care of Alex and our family. Also, a huge thank-you to Randi and Chai Lifeline for all the "care packages". They always came just when we needed something to perk us up. And, last but not least, thank you, thank you, thank you to Babs and Carey, Alex's chemo angels. They are the best two angels any child/family could have asked for. We hope to meet them in person when we fly through Chicago on our trip to Duke in November.
***Please tell everyone you know to donate blood or platelets if they can. There is still a nationwide shortage. For those of you in the Los Angeles area that would like to donate to CHLA, you can call them at 323-669-2441***
Hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Wednesday, August 13, 2003 5:28 PM CDT
Hi Everyone-
***Please tell everyone you know to donate blood or platelets if they can. There is still a nationwide shortage. For those of you in the Los Angeles area that would like to donate to CHLA, you can call them at 323-669-2441. Alex will need platelets on the 22nd. If anyone is able to donate for him, it needs to be done on Monday the 18th. There is a new test they do that takes a few days.***
We planned on a long clinic day and ended up having a short one. They forgot to order Alex's IVIG so we have to go back next week for it. His platelets were only 36 today, so we continue with the steroids. Sigh. The plan is to give the IVIG next Friday and then give him some platelets. They aren't comfortable with Alex flying with his platelets this low and we leave for Duke on the 23rd for his 9 month studies. I can't believe that yesterday was 9 months since transplant. Alex's hemoglobin was up to 11. That's the highest it's been since transplant and might explain all the energy he has:-) He also looks really healthy with color in his lips. Now if he could just make more platelets...
Alex finally started back with physical therapy last week. His physical therapist will come once a week to work with him. He needs to be more active now that he is on steroids because steroids cause you to lose muscle. The only problem with being active is that he has to be careful not to bump into anything since his platelets are so low. And, he can't be outside during the day because of his GvHD. All of this sort of limits activity. Hmm...Maybe I need a bigger house with a gymnasium :-)
I hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!
Jill
Monday, August 11, 2003 10:36 PM PDT
Hi Everyone-
Steve and I had a nice weekend. We found a really beautiful spot on the coast in Corona del Mar that we hadn't been to. We walked and walked and walked and enjoyed the gorgeous view. We also enjoyed the Pageant of the Masters and want to go back next year and get better seats. We were 3 rows from the back. The theatre is small, but it would have been more enjoyable if we were closer to the stage. The show is of "living pictures". They are recreations with real people posing to look like the original picture.
Alex and Emily had fun with Nana and baked lots of chocolate chip cookies. Steroid boy is on a roll and has been eating continuously. Let's hope his platelets are up and they can lower the steroids on Wednesday! I'll update again later in the week. Remember that no news is good news :-)
Hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Thursday, August 7, 2003 9:44 PM PDT
Hi Everyone-
Just wanted to give a quick update and let you know that things are going o.k. here. Alex's platelets were only 39 this week, so he is still on 30 mg of Prednisone a day. The "King of Food" has been eating anything and everything. Today Steve gave him breakfast number one, I gave him breakfast number two and he wanted to know what was for lunch at 10:00 a.m.! He has gained 7 pounds in the last two weeks. His current favorite foods are Crazy Kraft Mac and Cheese and burritos from El Tarasco. Alex's GvHD doesn't seem to be bothering him. Steroids can cause major mood swings, but as long as I agree with him and feed him he is pretty happy.
Steve and I are going down to the Laguna Arts Festival and Pageant of the Masters Friday. My mom is going to watch the kids. We are actually going to stay overnight and come home on Saturday. We can't remember the last time we went away overnight. Anyway, I'll update again on Sunday.
Hope everyone has a good weekend. Thanks for checking in on us and don't forget to sign the guestbook :-)
Jill
Friday, August 1, 2003 1:46 PM PDT
Hi Everyone-
Alex's platelets are up to 41. We are going to leave his steroids at 15 mg
2x a day for another week and re-check his counts next Wednesday. If his counts are on the rise, we will start to wean the steroids. Steroid boy is back!!! Alex is eating me out of house and home. The steroids make him goofy and Wednesday he was skipping down the halls at the clinic. The only time he has a meltdown is when I can't get him his food fast enough. He also melted down the other night because he was hungry and couldn't decide what to eat. The joys of steroids :-)
Gavi babysat for Emily while we were in clinic and then she went to park day in the afternoon. She made a new friend who is her age at the park. She had a really fun day. Alex had a play date with Zakkai yesterday and today his friend Calvin is coming over. It is sure nice to be able to see people :-)
We have a pretty quiet weekend planned. We are playing bridge on Saturday night with our friends, but other than that, no plans. We are going to do some things around the house and the kids have some things they want to play with Daddy this weekend that he hasn't had time for during the week.
I hope everyone has a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook!
Jill
Monday, July 28, 2003 9:14 PM PDT
Hi Everyone-
We had a nice weekend. On Saturday we took the kids to my mom's and drove up the coast to Ventura. We were going to go to Santa Barbara, but decided we didn't want to drive that far. We had lunch at the Natural Cafe. They have one in Santa Barbara, so Steve kept saying, "look, we didn't have to drive as far". We walked around downtown Ventura and down to the beach and then we walked around the Harbor area. We stopped at the outlets in Camarillo on the way back for a few hours and Steve was a really good sport. He is the world's worst shopper. If he never had to set foot in a store he would be really happy :-) We had dinner on the way back to my mom's, got the kids and drove home. We were pretty exhausted but had a great day. On Sunday we just hung out with the kids.
Alex is feeling good, but I'm sure he has no platelets again. He got a nasty bruise on his foot from the pressure of his sandal on the drive home from my moms. He also has a lot of other bruises and he hasn't bumped into anything. I mentioned this to Dr. K and she said she still thinks Alex has ITP which is part of the GvH and that he needs to double his dose of steroids for at least two weeks. She was going to call Dr. Shah. I thought they were on the same page, but I guess not. This is so frustrating! I guess we'll see what his counts are on Wednesday.
My mom is coming out tomorrow and I have to have a crown replaced. I once told the dentist I would rather give birth than have him work on my teeth. I really like my dentist, just not when he has to work on my teeth. The good news is that he can do everything in one visit. They used to put a temporary crown on and you had to go back. They can now make the permanent crown while you wait. I thought it was funny that he asked if I had been under any stress since he thought I was grinding my teeth. Stress?????? What would I be stressed from?????
Hope everyone's week is off to a good start. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Friday, July 25, 2003 11:25 PM PDT
Hi Everyone-
We had a loooooooooong clinic day today. We left our house at 8:30 and didn't get home until 4:30. I had hoped that we would be in and out of there but Alex needed platelets and he had the longest platelet transfusion on record. It took 2 hours to get the platelets in him. They don't put them on a pump, they let gravity push them in. My comment was that gravity wasn't working today! It usually takes 30-40 minutes. I had Emily with me and she was pretty good but she kept asking to go home. At one point she took my rolling duffle and headed out the door :-)
Alex's GvHD is eating his platelets. They are increasing his steroids to 15 mg 2x a day until we go back in next Wednesday. I'm hoping he doesn't get all puffy again. He was just asking when his cheeks would be smaller again. He has also lost about 17 pounds and is looking really good. Lets just hope the steroids take care of the platelet problem.
I'm going to get on my soapbox again. If you are able, PLEASE give blood or platelets. The nurse told me that yesterday they had NO platelets in the hospital. NONE!!! There is a nationwide shortage of blood products, so you can donate wherever you are.
Hope everyone has a great weekend. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Monday, July 21, 2003 9:54 PM PDT
DAY +251
Hi Ya'll-
Alex and I headed out to clinic early this morning. His platelets were down to 13 so they decided to give him a platelet transfusion. We will go back on Friday to check counts. Now for my mini medical lesson. The current theories about what is causing Alex's low platelets are GvHD or ITP. If it is ITP the treatment is mega doses of steroids. We are holding off right now and Dr. S will call Dr. K and they will decide what to do. Dr. K got the slides today and she said they look fine!!! Alex is feeling pretty good. Low platelets don't make you tired, that is low hemoglobin. Platelets are what causes the blood to clot when you get a cut. If your platelets are low, it is hard to control bleeding. When they took the needle out of Alex's port last Friday they had a hard time stopping the bleeding. They had to apply pressure for awhile. When platelets are low you also bruise easier. It's a concern that Alex's platelets are low, but it doesn't effect how he feels.
Tamah took Emily over to Debbie's and Debbie took Emily to her ballet class. She also got to go along to Hayley and Hayden's swimming lessons. When Debbie brought her home she fell asleep on the couch. I guess they wore her out :-) I would have taken her with us to clinic, but I didn't want her to miss out on her class since she really enjoys it. She'll get to come with us on Friday.
Today is Steve and my 13th anniversary. Steve is taking the day off tomorrow and we are going to spend the day together and my mom is going to watch the kids. We have a lot of errands we need to take care of, but at least we'll be together. We'll probably go out to dinner too. Steve asked if I felt like our lives are manic. I describe it as a roller coaster with no end to the ride. Since you never know what tomorrow may bring, enjoy today!
Hope everyone has a sunny week. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Friday, July 18, 2003 4:12 PM PDT
Hi Y'all
We were in and out of the OR in record time today. Then we had 2 doctors driving the pathologist crazy. They both kept calling and asking if the slides were done. We were on pins and needles when finally about an hour later Alex's old oncologist (Dr. Tishler) walked in with a thumbs up sign. He said Alex's marrow looks like it is recovering, but from what we don't know. His platelets are down to 21 today. We have to go back Monday for a CBC and possible platelet transfusion. He only gets a transfusion if his platelets are less than 10. They still don't know what is going on, but as long as it isn't relapse, I can deal with it and I won't even complain about driving one hour each way to the hospital every day :-) They told me to plan on being there a lot in the next few weeks while things get sorted out. I feel somewhat relieved, but I will feel more relieved when Dr. K sees them on Monday and agrees everything is o.k.
Alex is a trooper and did a great job today. His left hip is sore and he is limping around, but I know he will feel better soon. He is also tired since he was up really late on Wednesday night and we had to wake him at 6:30 a.m. today. Steve is tired too. I hear him snoring now :-) and it's only 4 p.m.!
I think we are going to have a nice quiet weekend at home. We might go walk a few laps at the Relay for Life event which is at the Park across the street from us. It is an event that lasts 24 hours and people raise money for the American Cancer Society. I personally don't donate a lot of dollars to them since they only spend one percent of their proceeds on Children's Cancer Research. If anyone is interested in donating to Children's Cancer, I like the NCCF. Their web site is www.nccf.org They also have a lot of info on Children's cancer. The Leukemia and Lymphoma Society also does a good job http://www.leukemia-lymphoma.org/hm_lls (Thanks Lynne for reminding me) One more thing and I'll get off my soapbox. Right now there is a critical shortage of platelets and Red Blood cells. There are huge restrictions in place on who can donate because of SARS. If you have been to a foreign country that is on a specific list in the last year you are ineligible. So, for those of you who aren't world travelers and are in good health, I encourage you to donate blood.
Thanks for listening to me and checking in on us. Hope everyone has a great weekend and don't forget to sign the guestbook!
Jill
Thursday, July 17, 2003 5:26 PM PDT
Hi Everyone-
Alex will be having his bone marrow aspirate Friday morning. Pray, pray, pray....
Jill
Wednesday, July 16, 2003 7:38 PM PDT
DAY 246
Hi Ya'll-
We had a long day at clinic today. We were there for 7 hours. Alex did really well as always, and the nurse asked him if he knew what his IQ was since he is so smart :-) Emily was going to go to Tamah's, but Gavi came home from camp with a cold. We sent Emily home with my mom last night who then took her to Linda's today. Linda is bringing her home tonight. My mom said that Emily kept asking when it was time to go to Brooke's, so I'm sure she had a fun day.
Alex Platelets crashed today. They are down from 126 two weeks ago to 29 today. They said it could be from a virus, GvH, or a relapse. They are scheduling a Bone Marrow Biopsy for Friday or next Monday. Please pray, send good thoughts, etc. that this is NOT a relapse. Alex has been doing so well. I haven't told him yet since I don't want to worry him. I'll update again when I have more information. Please don't call us now. We want to leave the phone lines free. E-mails are always appreciated.
Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Sunday, July 13, 2003 10:16 PM PDT
Day 243
Hi Ya'll-
No clinic this past week!!!
We had a pretty quiet week here. I would have updated sooner, but I have been a bit depressed since two of our transplant friends became angels this week. Jillian lost her battle on Tuesday www.caringbridge.com/fl/jillian and Douglas lost his battle on Friday www.caringbridge.com/co/nicollbrothers These were two courageous kids and they will be missed. Please keep their families in your thoughts and prayers as they deal with their loss.
Our week was quiet, but we had a busy weekend. We went to Nana's on Saturday for some fun in the sun and the pool. The heater is now working and the pool was great. Linda, Carl and Brooke came by to check out the pool and for dinner. Alex had a great time floating around in the water with an innertube. He says he can swim, but I'm not so sure. He was taking swimming lessons when he was diagnosed almost two years ago, but he never liked to get his head wet and still doesn't. Brooke is a little fish and was having a great time. She pulled Emily around on the "yellow bed" also known as a raft :-) Emily had fun until she got a mouthful of water and decided it was time to get out. I actually had to drag Alex out of the pool. After a couple of hours he looked like a prune! I had the most fun when I snuck up on Steve and dumped him off the raft. He was pretty surprised. I had the raft for about 2 minutes when Linda dumped me. We all had a fun time.
Today I went with Tamah to a program from Chai Lifeline. It was at a private home in Beverly Hills. I think the back yard is bigger than the lot my house is on! We had a relaxing time. While I was gone, Steve and the kids made homemade pizza, dough and all. It was very tasty. Marcella, I hope you read this :-)
Tomorrow Emily has ballet class and Zakkai might come over to play with Alex in the afternoon. Wednesday is our big clinic day for the month. Alex needs labs, Pentamadine and IVIG. We will probably be there all day. Emily is going to go to Park Day with Tamah and their home schooling group. She had a fun time with Gavi last month. Gavi got back from camp today and Emily is thrilled she is back and can play with her.
I hope everyone has a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill
Sunday, July 6, 2003 11:09 PM PDT
Day 236
*NEW PICTURES ADDED LAST WEEK*
Hi Ya'll
We hope everyone had a great 4th of July. We barbequed with Nana, Uncle Steve, and his girlfriend Janet. After dinner, Alex decided he really wanted to see fireworks, so we drove around looking for some. We found a spot in the Von's parking lot that was just across the street from where they were shooting some off. We couldn't have had a better view, and we were in our car, a germ free environment :-) Alex says that next year we have to go to the park to watch the fireworks.
On Saturday we went over to Nana's house. I can't believe we've been home 6 weeks and this was the first time we were out there. The kids had a great time and Emily and Steve went in the ice cold pool. My mom is putting a new heater in soon, so it will be nice and warm. Alex didn't want to go in the pool since there were three bee's taking a drink of water. It was in the mid-90's outside. Guess the bee's got thirsty!
Last week was pretty quiet which was nice. Emily had her dance class on Monday and just loves it. She put her leotard on as soon as she woke up, tights and all. On Tuesday my mom watched the kids in the afternoon while I ran some errands. On Wednesday we went to clinic and had a nice short visit and don't have to go back for two weeks. We are weaning Alex's Ora-pred (steroid) and Methadone (narcotic). He's doing pretty well. He still doesn't have much of an appetite, but he only lost one pound in the last two weeks. He still talks about food a lot, he just isn't eating it :-( His kidney functions were down a lot from the previous week which is good. He has been doing a better job drinking most days. On Thursday evening Tamah and I went out for coffee and a little bit of shopping. While we were in North Carolina they re-did the mall near us. It is really nice now. They have opened a few more stores and restaurants.
Today we are planning on picnicking at the concert in the park. The Doo-Wah-Riders will be playing. A few friends might join us, we'll see. I'm not sure what we'll be up to this week, so check back soon to find out :-) Thanks for checking in on us and don't forget to sign the guestbook.
Jill
p.s. - a transplant friend of ours from Duke could really use your prayers and good thoughts right now...her website is www.caringbridge.org/fl/jillian
Saturday, June 28, 2003 4:15 PM PDT
DAY 228
NEW PHOTOS ADDED TODAY!!!
Hi Ya'll-
Things haven't slowed down around here. I think we had an even busier week this week than last.
Emily started her dance class with her friend Hayley on Monday. She had a really fun time and was so cute! Grandma was here to watch Alex but this week I'll have to take him and find a germ free place for him and Hayley's brother Hayden to play their Game Boy. Alex hasn't seen Hayden since we've been back and is looking forward to it. Before dance class I took Alex to a game store nearby to trade in some games. He was so upset when we got there since the store didn't open until 11 a.m. We decided to go back later in the day and see if it wasn't crowded. We lucked out and there was only one other person in the store. Alex traded some things in for two new Game Boy Advance games. He really perked up after his outing. I need to find some "safe" activities for him to do. He really wants to be doing normal things again. Unfortunately it will take his immune system 12-18 months to get back to normal.
On Tuesday I had a doctor's appointment in the morning and a dentist appointment in the afternoon. In between I took Alex over to get his new glasses and ran to trader Joe's and Target (without Alex). My mom came over and ended up taking Grandma to the airport since I wasn't back. We had a nice visit with Grandma and Steve and I were able to get out a little. We walked on the Strand, but didn't picnic on the beach. We opted for sitting outside at China Grill. It was very relaxing.
Alex is doing well. We went to CHLA on Wednesday for labs. His FK506 level (anti-rejection med) has been running high and his kidney functions were high as well. He needs to drink more and this has been an ongoing battle. If anyone has any suggestions, I'm all ears :-) We have been trying to get a daily walk in around the neighborhood to strengthen Alex's legs. We are still trying to get Physical Therapy set up.
We had a short visit at Tamah's on Wednesday after we got back from clinic . Alex really wanted to play with Zakkai, but he is on steroids now and has a really hard time with them. He actually did really well when we were over there this time. We had visited once before when Zakkai was on steroids and Alex said "never again"! I think both of the boys have matured a lot from what they have been through.
Steve took the day off on Thursday and we had fun playing outside with the kids. Alex and Emily loved using their squirt guns...thank you Angel Carey. Emily liked getting wet and Alex did not. I also went over to Costco. It amazes me that it is more crowded here mid-week than it is on a weekend in Durham. It seems so much more crowded here than it was eight months ago and the traffic is unreal.
I still have a few boxes left in the garage to sort through. I'm still trying to organize everything, but the house is in pretty good shape. I spent a few hours in Emily's room yesterday cleaning out and I'm not done yet! I haven't started to tackle Alex's room yet. I'm scared to go in there. I might get lost in Legoland :-)
Our friends Deborah and Doug are coming over to play Bridge tonight. We haven't played in so long that I hope I remember how. I'm also looking forward to trying a new recipe for dessert. It's so nice to be able to do some normal activities.
Tomorrow Emily and I are going to Beauty Day from Chai Lifeline. Emily can't wait to get her hair and nails done and she's only 4. Boy am I in trouble! They also have Arts and Crafts and will be feeding us lunch. Emily's big sister Chaya will also be there.
I'm hoping for a nice quiet week this week :-) I hope everyone has a sunny week. Thanks for checking in on us and don't forget to sign the guest book and let us know you stopped by.
Jill
Thursday, June 19, 2003 11:31 PM PDT
Hi Ya'll-
We've been busy! Last Saturday's outing to the Celebrate Life Days was fun. We went on the never ending train ride. They asked if we wanted to go around once or twice. I figured we should just go twice since we were already on the train. Well, twice around the very very long track turned into a 30 minute ride. We were all complaining of numb bottoms when we got off. This train is a live steamer that runs on a narrow gauge track. You sit on a bench. It was still fun, just longer than we expected. They also had Arts and Crafts and Arcade games. The kids had fun doing the games. Everyone was a winner and the kids collected a lot of prizes. They also had Baskin Robbins Ice Cream and pizza and burgers. The ice cream was a big hit.
After we got home from the Celebrate Life Days, Linda, Carl and Brooke came over for dinner and didn't leave until 10:00 p.m. We were all pretty tired the next day, so we had a nice relaxing Father's Day. Steve enjoyed playing in the yard with Emily and playing Yu-Gi-Oh with Alex.
On Tuesday I took Alex to the eye doctor in the morning and Emily to the pediatrician in the afternoon for her four year check-up. Alex picked out a pair of new frames after trying on many. He didn't like anything, so I hope he likes what he picked out. Emily is in the 50th percentile for height and weight, so she is right on track. She did really well until they poked her for blood. We went and bought some cookies afterwards and that made her boo-boo all better. We also went to buy an outfit for her dance class that starts next Monday. She is taking it with her friend Hayley. There is a Japanese Garden outside of the classrooms, so Alex and I can sit out there. I just hope that the germy kids stay home!
Yesterday I dropped Emily off at Tamah's at 9:30 and Alex and I headed to the clinic for labs, IVIG and Pentamadine. His labs look good. We were at clinic all day and didn't get home until 5:00. Alex was cranky from the Benadryl that he got before the IVIG so he took a little nap. Emily had fun playing with and following Gavi around. Gavi painted Emily's fingernails rainbow colors. I think Emily is going to be one of those girls who needs to do her nails 5 times a week :-)
Today Zakkai came over for a few hours to play with Alex. They had fun playing video games. Alex wants to know when Zalkkai can come over again and Zakkai didn't want to leave. He said he hadn't been here for very long :-)
Steve flew up to Oakland tonight for a meeting in Berkeley tomorrow. He will be home tomorrow night. When we dropped him off at the airport, Emily was all sad and kept saying she misses her Daddy :-( She is always bummed when she gets up in the morning and Daddy has already gone to work too. Such a Daddy's girl.
Emily has been up to her antics again. The other day she apparently decided to swing from the towel bar in her bathroom. Well, the bar came out of the wall. We were going to give her a bath and she said that we couldn't since something was broken in the bathroom. We are now sporting a nice hole in the bathroom wall! Tonight she came running to me all hysterical and I had to keep from laughing...she had dropped her chap stick in the toilet. I know it was an accident, but she was really upset. For those of you wondering, it floats :-) Now she wants a new one that is Strawberry flavor like her Strawberry Shortcake dolls.
Tomorrow (Friday),Emily's big sis from Chai LIfeline is coming over. Emily is excited. She loves to play with Chaya.
On Saturday Grandma is flying down for a few days. We haven't seen her since we shipped her home from North Carolina when she was sick. We're all looking forward to her visit. Steve and I want to go have a picnic dinner on the beach on Saturday. Hopefully it will warm up a bit by then. It's been pretty cool here.
I think that summarizes our busy week. I hope everyone has had a sunny week. Have a great weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!
Jill
Friday, June 13, 2003 1:34 PM PDT
Hi Ya'll-
I just thought I'd do a short update before the weekend. On Wednesday I raced out to Toys R Us when they opened. I had promised Alex he could go and spend a gift card that he has had for awhile. The store was empty (what I counted on ) and we were in and out in ten minutes. Alex bought a few of the Zoids that you have to build. He has been working on them ever since. All day, I might add! Emily got a Disney Princess Story book for her Leap Pad. She really loves the Leap Pad. Then we headed over to Blockbuster where we were the only people in the store. Alex walked up to the manager and told her he had a transplant. This kid is no longer a shy little boy! She was very nice and told him to let her know if he needed any help finding anything :-)
This weekend we are going to the Celebrate Life Day celebration for Cancer Survivors that CHLA has every year. They have train rides. arts and crafts, a dunking tank, food, entertainment and more. We weren't able to go last year, so we are looking forward to catching up with some of our CHLA friends.
I hope everyone has a great weekend and Happy Fathers Day to all the wonderful dads out there :-)
Thanks for checking in on us and don't forget to sign the guestbook. We still love to see who's checking in on us.
Jill
Monday, June 9, 2003 10:54 PM PDT
Hi Ya'll-
We had a nice SHORT clinic visit on Friday and we don't have to go back until June 18th!!! It was nice seeing some of my CHLA family again...lots of hugs were exchanged :-) Everyone was thrilled to see Alex doing so well. He seems to have more energy each and every day.
On Saturday we went to visit with Linda, Carl and Brooke. The kids had a fun time and can't wait to visit with Brooke again. Linda and I took a ride in her convertible. She bought it just before we left for Duke, so I had never seen it. That was sure fun :-)
On Sunday Steve went off to buy a new BBQ and some flowers to plant in the front of the house. The landscaping isn't bad considering we were gone for eight months. I still have things to put away in the house and have about 6 boxes left in the garage. I'm not bringing one more thing in the house until what's in it is put away! Alex's room looks like Legoland. He says he is going to clean it up today...
Things have been pretty uneventful, but uneventful is good!
Hope everyone has a sunny week. We have "June gloom" here. No sunshine :-( Thanks for checking in on us and don't forget to sign the guestbook. We love reading all the entries :-)
Jill
Sunday, June 1, 10:10 p.m.
DAY +201
Hi Ya'll-
We have been home one whole week and are loving it!!! The house is still a disaster but I don't care :-) Richard and Kim brought us the four suitcases they had taken home for us today. It was nice to see them. The kids always love to play with them. We now have all of the things we shipped home minus the items that were lost or should I say destroyed by the US Postal Service. I can't believe how they mishandled our boxes. We shipped 5 boxes home through them and three of them were damaged and one of them disintegrated. They tried to put some of the boxes back together, but they didn't manage to get all of our things back in the box and even gave us some salami and honey that was not ours. Makes me wonder who got my stuff. We also had a problem with Fed-Ex. We shipped 7 boxes with them. Six made it home intact and one was opened and the contents were moved to another box minus a few things. I realize that these are possessions that can be replaced, but it was still my stuff and I want it back!
In other exciting news, our phone wasn't working when we arrived home last week. It is now fixed. Our refrigerator is leaking water and we can't find the source. I'll have to call someone tomorrow. We went to grill last night and found a leak in the gas line, so the BBQ is history.
After all we have been through at Duke and all we have seen others go through, none of the above is really bothering me. It is a nuisance, but I'm not losing any sleep over it. Alex is doing well and that's all that matters. He had his first appointment at CHLA on Friday and he said he liked the doctor. Steve took him since I had been trying to stay away from him because of my cold. They were in and out of the clinic in less than 2 hours. After the long clinic days at Duke it was a nice surprise. Alex does have infected toes and is on an antibiotic for 5 days. We are also soaking them 3-4 times a day in betadyne. I don't really understand why, but apparently this is common post transplant and will hopefully clear up when some of the medications are weaned in a few months. We go back to CHLA next Friday.
Yesterday Alex and I went to the dress rehearsal of a play that my friend Tamah's kids were doing with their homeschooling group. It was at an outdoor amphitheatre at a nearby park. Alex just laughed and laughed and had such a great time. Now that we are home I'm hoping to find other "safe" activities.
I hope everyone had a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook. We love reading all the entries :-)
Jill
Thursday, May 29, 2003 1:21 PM
Hi Ya'll-
WE ARE HOME!!! Can you say EXHAUSTED??? I 'm sorry I haven't updated sooner, but I somehow managed to get a cold...my first one in almost 2 years and I'm really tired. I'm also having a hard time getting back on Pacific time. I am the world's worst traveler!
We USAIRed it on Sunday. There was a super nice gate agent who was a supervisor that bummed Alex and me up to First Class. Steve and Emily we stuck in coach :-( It was an uneventful flight home. We deplaned in Charlotte and walked to the next gate and they were already boarding so we got on. Emily was antsy and kept running back and forth between Steve and me. She also had to use the bathroom 5 times on the 4 1/2 hour flight. It was interesting squeezing into the very tiny bathroom with her. I don't think they were built for two!
We arrived home at 4:00 Pacific Time and my mom and friend Linda met us at the airport. We hauled all of our stuff home and then got some of Alex's favorite Mexican take-out from Baja Fresh. The kids were up until 9:00 p.m. checking out all their old toys and newly decorated rooms. Alex said that the next time we redecorate his room that he is doing it himself since he can't find anything!
We are digging out and it's going to take awhile. We need to get rid of some things to make room for all the stuff we brought back from North Carolina. We shipped 16 boxes, sent 4 suitcases with Uncle Richard, one large duffle with Tamah, and had two cars full of junk! It's all going in the garage for now...I don't know what to do with everything!
Our first appointment with the BMT doctor at CHLA is tomorrow. I'll try to update again over the weekend. Hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!
Jill
Tuesday, May 20, 2003 10:43 PM EDT
DAY 189
SEE NEW PICTURES
Hi Ya'll-
On Saturday we packed up a few more boxes and Steve shipped off five of them. This place is starting to look empty, but empty is GOOD! Tomorrow we are shipping car #2 as well as some more boxes. We heard that there was a private plane we could get a ride on today, but we were still in clinic. Hopefully something will come up later in the week, and if not, we are USAIRing it on Sunday.
Alex doesn't want to leave before his Thursday play date with Isaiah. Today Isaiah came up to me in clinic and told me we couldn't leave. I felt like I was being ambushed! It has been a blessing to go through this transplant experience with friends, but I wish neither of our families had to be here. We will really miss the Bingham's when we go home. Steve wants to know if I'm going to run up the phone bill :-)
We had a pretty busy clinic day today, but everything went well. It was a day filled with lots of hugs and good-byes. We are sad to say good-bye to all of the wonderful people we met here, but we are so excited to be going home. We hope all of our transplant friends are able to go home soon too!
Today Emily turned four. On Sunday we had her birthday party. She had a fun time and thought it was "silly" that she wouldn't be four until today. She kept telling me that she is four. She is such a big girl now :-)
We couldn't have made it this far in our journey without the love and support from our family and friends. Thank you ALL! I might not get a chance to update until we get home and get our cable modem set up. Until then, I hope everyone has sunny days. You can reach me at jillschwab99@hotmail.com -- My CAdreamin account won't work once we leave here.
Jill
Thursday, May 15, 2003 11:26 PM EDT
DAY +184
Hi Ya'll-
We've had a busy week so far. On Monday Alex had his Hickman catheter removed. He did really well. The anesthesiologist told me that the procedure took all of 5 minutes. Alex has been sore, but felt much better today. On Tuesday we had our weekly clinic visit (one to go!!!). Alex had more blood drawn for his 6 month tests, got his IV medicine and we saw Dr. K. We were so excited to see his platelets over 100...they were 101. His hemoglobin had also risen to 9.3, and surprisingly his chimerism test was back. It showed greater than 99% donor cells. This was expected, but it is always nice to know for sure. The rest of Alex's 6 month labs will take a few weeks to get back.
We had a fun time with Uncle Richard and soon to be Aunt Kim. Emily was glued to Kim. Alex and Richard could be found in front of the Game Cube most of the weekend. We appreciate the babysitting services, and the u-haul service that Richard and Kim provided. I think we'll have to go to San Diego more often to drop the kids off! Alex's only complaint is that he didn't like their cooking. He told me that I can't leave at dinner time :-)
I'm continuing to pack up but with many interruptions. Yesterday Emily wanted to make muffins, so I took a packing break. The phone also seemed to ring off the hook. There is a lot of scheduling that needs to be taken care of. Hopefully everything will end up in boxes by the time we leave :-)
Today Isaiah and Pat are coming over for a visit. Alex wanted to know how many more play dates he can have with Isaiah before we go home. We are all really going to miss getting together. We plan on meeting here in August for the boys 9 month check-ups.
On Sunday I'm having a small party for Emily for her 4th birthday which is on the 20th. It just so happens that it falls on a "terrible tuesday". I was going to do something during the week, but decided that the weekend would work out better. I'm sure she will be happy to eat Scooby cake a few days before her birthday :-)
Hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook. We like to know who is stopping by to visit us.
Jill
Sunday, May 11, 2003 12:10 PM EDT
DAY +180
Hi Ya'll-
Alex's 6 month testing went well on Thursday. I ran into Isaiah while waiting with the kids so I asked Pat if she would watch Emily for a few hours. We were already planning on going to visit when we were done. It was so nice to run back and forth from the clinic to the hospital without Emily in tow. Thanks Pat! She had a fun time playing with Isaiah who has decided that he wants a baby sister, but not one like Emily. He says she is too active :-)
Now for Emily's antics...Emily is a junk food junkie. We are having a problem when we leave any sugary food within her reach. She helps herself to it. Actually if it is out of her reach she climbs to help herself to it! The other night I had left unsweetened baking chocolate on the counter. The next morning I noticed that a little mouse named Emily had taken a few bites. We had a chat and she told me it was yucky! The funniest thing of all is that I remember doing the same thing when I was younger :-)
Uncle Richard and soon-to-be Aunt Kim arrived safely on Friday. Saturday we packed up and shipped off some boxes. There is still a lot to pack, but it is getting better. It seems that most of the boxes are loaded with toys. I think I'm going to need a bigger house!
Today we are going to cousin's Howard and Sandy's for dinner. They live in Raleigh. The kids love going to visit and play with their dog Pisher. The kids now want a dog when we go home. I'm not sure about that. I might consider a small one, but I'm still thinking about it :-) Any ideas on cute, cuddly, low maintenance doggies are welcome.
Tomorrow Alex will have his his Hickman removed in the morning. Later in the day we have a meeting with Dr. K to discuss our transition back to Children's Los Angeles. She is also going to show Richard the slides of Alex's BMA's from when we got here. Richard is starting his fellowship in Hematology/Oncology, so this is something that he is interested in. Steve wants to look at the purple blobs too, not that he will know what he's looking at. :-)
Happy Mother's Day to all the mom's out there. I hope everyone has a sunny day (but not as hot and humid as it is here). Thanks for checking in on us and don't forget to sign the guestbook. Your entries mean a lot to us.
Jill
Wednesday, May 7, 2003 10:25 PM EDT
DAY +176
Hi Ya'll-
Yesterday's clinic visit was crazy as usual. On Monday late in the afternoon I got a call from one of the NP's saying that Alex had to go to pre-op between 9:00 and 9:30 for his line removal on the 12th. He also had to have his six month labs drawn by 10:00. I thought his line removal was on the 15th and his pulmonary function test, echocardiogram and chest x-ray were on the 12th. Well, they changed all of those tests to tomorrow. We're in for another fun filled day :-)
Yesterday while we were in pre-op Alex complained that his ear was bothering him. It turns out that he has an ear infection so he is on a 10 day course of oral antibiotics. I have no idea how he got an ear infection. This is a kid that has only had ONE ear infection before. Two hours after his antibiotic Alex felt sick and ended up vomiting. We're not sure if it was a reaction to the IVIG he got earlier in the day or from taking the antibiotic without food. Tonight Alex took the antibiotic with food and seems to be doing o.k.
On Monday night we went to the Durham Bulls baseball game. They are the AAA team here in Durham. I got them to donate a private Sky Box for the night. Seating was limited, but we were able to have a few of our BMT friends. Everyone had a great time running from the seats outside to the seats inside. We were worried that it was going to be too hot, but it was actually too cold. It had rained that day and the temperature was only 55 degrees. Brrrr.... and I had packed up all of our winter clothing.
We're still packing. My mom asked me how much more I could possibly have to pack. I just started laughing. We put 100 pounds of stuff in Steve's trunk tonight and it seemed like nothing. We can put 100 pounds in the trunk of each car when we ship them home. I spoke with Richard tonight and he said he is bringing us 3 suitcases to load up. Another 210 pounds can be sent out :-)
Hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook. Your entries mean a lot to us :-)
Jill
Sunday, May 4, 2003 10:55 AM EDT
*SEE NEW PHOTOS*
DAY +172
Hi Ya'll-
The Rainbow of Heroes Walk was today. Everyone had a good time. I did all the walking for our family. Alex made it once around the track, and Emily made it half way around the track. Steve and the kids watched all the rest of us sweat out 13 laps! I am happy to say our fundraising efforts helped raise a total of $41,818 dollars!!! Our family was one of the top ten fundraisers, raising $1,059 dollars. Thank you all again for your generous donations :-)
Alex had fun escorting the Duke Blue Devil out onto the track. We have a secret, we know who the Blue Devil is and we're not telling :-) Alex went off with Dr. K for awhile and had fun visiting with some friends. He was really bummed that the dunking tank didn't show up. He really wanted to dunk Dr. Martin. He figured that he had a shot at it since he has a good aim. Dr. Martin even had his change of clothes with him! Steve enjoyed the North Carolina BBQ lunch, and Emily had fun eating donuts, cake, and a lollipop. She is a sugar junkie. It was so nice to see all of the BMT families out there today. We might not get a chance to see many of them again before we leave Durham.
Speaking of going home, I don't know where we are going to put all of the stuff we accumulated here. Our house in CA is small. I keep packing up boxes, and it seems like I haven't done anything, there is still so much more to pack. Where did it all come from??? I'm taking a break tomorrow to go have lunch with my friend Pat and do a little "window" shopping. I cannot buy one more thing here!
While I've been out :-) my friend Linda has been busy not only painting the kids rooms, but redecorating as well. Thank you Linda for all your hard work!!! I'm not going to recognize my house when I get home.
I mentioned that we only had 3 clinic visits left, but what I forgot to mention is that we have a lot of days at the hospital for Alex's 6 month testing. It also looks like Alex will get his Hickman catheter removed under anesthesia on the 15th. The next few weeks are going to be really crazy with packing and visits to the hospital and having guests. Steve's brother Richard and his fiancé Kim are arriving on the 9th. It will be great to see them. They cancelled their trip last December because Richard got sick. Our experience with visitors is that if they are coming to see us they will get sick. Emily still thinks Grandma is at the hotel :-) I keep telling her Grandma went home, but she insists she is at the hotel and wants to stop in to visit. Let's hope Richard and Kim stay healthy!!!
Hope everyone is having a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Wednesday, April 30, 2003 11:30 PM EDT
DAY +169
Hi Ya'll-
Not much is happening here. Things are winding down. We only have 3 more clinic visits!!! Alex is doing well and is so excited to be going home. He has been counting the days until May since we are going home then. We have packed up quite a few boxes of stuff. I'm not sure where it all came from. We sure accumulated a lot of junk in the last 7 months.
We are looking forward to the Rainbow of Heroes Walk on Saturday. It should be a lot of fun. A few families that we know who had gone home will be in town for the walk. It will be nice to visit with everyone. All the kids who have to endure 5200 are true heroes. Many of Alex's cell mates on 5200 have lost their battle and we will be walking to honor them as well as all the kids who are doing so well. Someone said that they have never seen so much joy and sorrow all in the same day. That pretty much describes what 5200 is like. If you would like to make a contribution, you can still do so. I can turn in money until we leave Duke. Thank-you to all for your generous contributions. We are up to $884. I don't have the info for people who have donated on-line unless they told me they had contributed, so hopefully we have raised more $$$ :-)
Thanks for checking in on us and don't forget to sign the guestbook. Your entries mean a lot to us!!!
Jill
Thursday, April 24, 2003 10:23 PM EDT
DAY 163
Hi Ya'll-
Our Tuesday clinic visit went pretty smoothly. No drug changes this week. Alex is feeling good and seems to have more energy each day.
Yesterday we went over to the Bingham's. Alex, Isaiah and Mishael had fun playing video games. Pat gave me a cooking lesson. We made Potato Leek Soup that was delicious. While visiting, we seemed to have lost Emily. I thought she was eating lunch, but 30 minutes after sending her to the bathroom to wash her hands, I found her still there washing them. She likes the bar of soap that Pat has in the bathroom. She now has the cleanest hands in the state of North Carolina!
I want to thank everyone who has contributed to the Rainbow of Heroes Walk. We appreciate your generosity. We have raised $500 so far. There is still time to make a donation :-) We are looking forward to the walk, it should be a lot of fun. Alex found out that they have a dunking booth, so he asked Dr. K if she had a bathing suit. She asked him where they were going :-) Alex told her he wanted to dunk her at the walk. She said that she has seniority, and that he can dunk Dr. Martin. Alex thinks that will be fun too!
We are starting to pack up a few things. Emily asks daily if we are going home *today*. It's hard to explain weeks to a 3 year old. She wants to go NOW! She can't wait to see her girlfriends Hayley and Brooke. She told me that she is going to have a girl birthday party with her girlfriends when we get home. Emily will turn four on May 20th.
Hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill
Friday, April 18, 2003 10:37 PM EDT
DAY +157
Hi Ya'll-
Well it was definitely Terrible Tuesday here. We spent 9 1/2 hours in clinic this week. We arrived at 8:45 a.m., and after being there for almost 1 1/2 hours I decided to try to figure out why Alex had not been weighed in yet. They kept telling me they didn't have his papers. I sent Alex to the pharmacy to find out why his IVIG wasn't ready and they told him that he wasn't in the system. Guess that's why there were no papers. They took him back to give him his IVIG anyway and went in search of the missing paperwork. Alex was done at noon, but we didn't see Dr. K until 6:00 p.m. I think it is a little excessive to wait 6 hours to see the doctor! We sure won't miss clinic day when we go home.
Alex's platelets were up to 50!!! We were so excited. His hemoglobin was 8.5, but it had been in the 8's all last week, so it's holding. We checked counts again today, and everything looks good. We are still on target to go home at the end of May.
Wednesday we recuperated a little from our long day on Tuesday and I cooked a few of Alex's favorite things for our Passover Seder. Unfortunately, Alex's tummy wasn't feeling very good from the cottage cheese he ate earlier in the day. He only had a bite or two of yummy foods and ran off to the bathroom. He said Nana's cooking is better than mine, but I don't think it was my food that made him throw up!
On Thursday Alex was feeling better and we went miniature golfing with Isaiah and Pat. It was a bit too hot for Alex. He has a hard time with the hot days. This is not uncommon post-transplant. When Alex goes outside, he gets really flushed and starts itching. I asked Dr. K what we could do and she told me to keep him indoors on hot days. Well, that's no fun!
Steve had today off from work, but it was a rainy day here. When Steve left to drop Alex's labs he came back in and said there was a chill in the air. It was 46 degrees! I'm not sure what we will do this weekend. It is hard to find safe activities.
We hope all of our family and friends are having a nice Passover. Happy Easter to those of you who celebrate. Thanks for checking in on us and don't forget to sign the guestbook!!!!!!!!!!!!!!!!!!!!!
Jill
Sunday, April 13, 2003 4:02 PM EDT
DAY +152
Hi Ya'll-
Well after a week of rain, it is really nice here. Yesterday we went to the Duke gardens. It was Duke Homecoming weekend, so it was a zoo. We had to park on the street and walk in. Alex was complaining it was too hot for him, so we did a loop around the gardens, saw the ducks, and decided to get one of our favorite pizzas from I Love New York Pizza. Steve called to order and they told him they were out of business and hung up. The owner likes to joke around, so Steve called back and was told that the banging sound he heard was the stove going out the door. We were still a little uncertain about what was going on, so we drove by the store and sure enough they were loading up two trucks. It was a sad day in Durham! Where will we get pizza now???
We spent Thursday and Friday with Pat and Isaiah. We all enjoy getting together. We will really miss them when we all go home. They are planning on leaving the same weekend as us. You can visit them at www.caringbridge.com/mi/isaiah We plan to make the next 6 weeks count and have lots of fun together. We also plan to meet back at Duke for the boys 9 months check-ups in August.
On the medical front, we drew labs more than we would have liked this week, but Alex is holding his own, and tomorrow it will be 4 weeks since his last red blood cell transfusion and 3 weeks since his last platelet transfusion!!! We had a little bit of a scare on Thursday. Alex was not feeling well and was nauseated. I e-mailed Dr. K and she said to give him a boost of steroids and increase them until she sees Alex on Tuesday. About two hours after the steroid boost Alex was up and jumping around. Whew...big sigh of relief here.
On the home front, my friend Linda has been busy this weekend painting the kids' rooms for me. Emily's is now pink and Alex's is yellow. Emily tells me every day that she wants to go home to California. A super huge thank you to a super friend!
Hope everyone is having a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook!!!
Jill
Wednesday, April 9, 2003 9:19 PM EDT
DAY +148
Hi Ya'll-
We were out of clinic in 5 hours yesterday...almost a record! Alex continues to do well. After 73 platelet transfusions and 17 red blood cell transfusions, it looks like Alex is making his own cells. He hasn't had a red blood cell transfusion in 3 weeks and a platelet transfusion in 2 weeks. A very big thank you to all the people who donate blood...it is a lifesaver for many, including Alex.
Well, the weather here is very unpredictable. It was in the 80's last week, and it is now in the 40's. My friend Tamah was here this past weekend and I sent home all of our winter clothes with her. Brrrrrr!!! It was great fun seeing her, and I now understand the saying, "shop till you drop". Bet you can guess what we did :-)
The kids can't wait to go home to California. I want to mention that restrictions on visiting will still apply. No one may come near us if they are sneezing, coughing, congested, have a fever, etc. Alex's immune system will not be fully functioning until about one year post transplant. Alex told the nurse today that his Nana wants to have a welcome home party for him. She looked at him and said, "I don't think so". Seven weeks and counting down.....
Now for Emily's antics...she was lying on my lap in clinic and I kept telling her to keep her hair off the floor. She said, "but mommy, I'm washing the floor". Now I think I need to wash her hair :-)
Hope everyone is having a sunny week. Thanks for checking in on us, and don't forget to sign the guestbook!!!
Jill
Thursday, April 3, 2003 11:08 PM EST
DAY +142
Hi Ya'll-
Sorry I haven't updated sooner. Things have been crazy here. Alex is doing GREAT! He hasn't had a platelet transfusion in 10 days! We check counts tomorrow. He is getting stronger every day and tonight he was even dancing to his Song of Love. He *loves* it! That is the first time he has danced post transplant and it was great to see.
The big news here is that I actually booked a flight home for May 25th! It is exciting and scary at the same time. If all continues to go well, we will be home Memorial Day Weekend. We really don't want to fly commercial, so if anyone can pull any strings to get us home on a private jet, we would greatly appreciate it. The other big news is NO MORE IV MEDS!!! Alex is on 8 oral meds and he gets one IV med once a week in clinic and he has a breathing treatment once a month that helps prevent a specific type of pneumonia that immuno-suppressed people are susceptible to.
Grandma arrived safely on Monday evening, but somehow managed to get herself sick, so she is at a hotel tonight and is being shipped home tomorrow. Why is it that when someone comes to visit us they get sick? She hasn't been sick since she left here three months ago. At least Steve and I went to dinner last night. I'm glad we didn't wait until the weekend. Alex has decided that no one else can come visit since they will probably get sick. My friend Tamah is coming this weekend and Steve's brother Richard and his fiancé Kim are coming at the beginning of May. Let's hope they all stay healthy!
Today we were going to go miniature golfing with Isaiah, but it was too hot (80's), so we just visited with Pat and Isaiah instead. My kids don't eat at my house, but they sure love to eat at the Bingham's. Pat, thanks for being a short order cook!
Hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Wednesday, March 26, 2003 10:35 PM EST
!!!CHECK OUT NEW PICTURES!!!
DAY +134
Hi Ya'll-
On Monday Alex almost pulled his line out. I nearly fainted! He decided to get up and he forgot his pump. Luckily it broke at the tubing on the syringe, and not at the Hickman. I ran over and clamped him, and then called the clinic. While on the phone I realized his tubing was dangling on the floor. I quickly undid it. They drew cultures to make sure no bacteria got in, but I'm sure nothing will grow. They said that they would have been more concerned if the line broke closer to his body. We still need that line for a few more weeks.
Yesterday's clinic visit went well. We were out of there by 1:00 p.m.! Alex is down to one IV med twice a day and it is a push that only takes a few minutes. We plan to switch this drug to oral form next week. Then we will have no IV meds. I can't wait. The best news of the day was NO labs or clinic visits Wednesday and Thursday. We will check Alex's blood counts on Friday. When we get down to weekly blood draws, they will remove Alex's Hickman line. He still has his port-a-cath which he loves. They needed to flush the line yesterday and he said that he didn't even feel the needle going in. This is without any numbing cream! One of the benefits of the port-a-cath is that Alex will be able to take a shower again and not worry about getting his line wet.
Grandma is coming on Monday for a week. We hope she stays healthy so we don't have to send her to a hotel and ship her home. Steve and I really want to get out without the kids, so hopefully we will be able to when she is here. I can't remember the last time the two of us were alone.
Hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook. We appreciate all the entries. Alex loves to know that you stopped by (and I do too!)
Jill
Sunday, March 23, 2003 11:14 PM EST
DAY +131
Hi Ya'll-
Wow, two updates in a couple of days...check out previous journal entries for Thursday's update of the week.
This has been a very pleasant weekend here in the South. Yesterday we went out for a walk and Alex didn't wear his mask for the first time in 6 months. He was all giggly and goofy and I asked him why he was so happy. He said, "wow, I can feel the air on my face". Something that most of us take for granted really lifted his spirits. Today we met Isaiah and family at the park. It was pretty crowded and Pat and I were a bit nervous, so we all went for a walk and when we got back to the playground it had pretty much cleared out. It was so nice to see the kids running around having fun. For a moment I could almost forgot what they have just been through, it seemed so NORMAL!
Emily and I had fun at the Dragon Tales concert. Emily was a squirmy worm, and wanted to go home before the end, but I think she had fun and enjoyed all the attention she got from me. On the way home I thought I heard something strange near the rear of car, and then I didn't hear it, so I forgot about it. Well, Steve went to take labs in yesterday morning and noticed that my rear tire was flat as a pancake. He did manage to drive slowly to the tire store that is really close to here. They were able to patch it. Guess we'll just have to keep an eye on it.
I'll update again after our Tuesday clinic visit, but probably not Tuesday! I generally collapse on Tuesday evenings.
Hope everyone has a sunny week. Thanks for checking in on us and DON'T FORGET TO SIGN THE GUESTBOOK! Your entries mean a lot to us.
Jill
Thursday, March 20, 2003 10:13 PM EST
DAY +128
Hi Ya'll-
*PLEASE SIGN ALEX'S GUEST BOOK AND LET HIM KNOW YOU STOPPED BY*
Well, the itchy rash that has been bothering Alex all week is a little GvHD flare up. GvHD occurs when the body does not recognize the new cells as "self". We have increased his FK506 and are putting on a cream that seems to help. This is fairly common, and Alex is feeling a little better.
We had our VERY LONG clinic day on Tuesday. We got there at 8:40 a.m. in hopes of getting out early. Alex was done with his meds at 11:30, but we didn't see Dr. K until 4:00. Steve brought Emily by a little before 1:00, so at least she wasn't there all day. Emily really enjoys the Art Mates group on Tuesday's and loves Kara, the woman who is always there with a fun craft for he kids and parents! Since Alex is doing well, we continue to wean meds. He is down to two IV meds in the morning and one or two in the evening. We did eliminate one of the morning oral meds, but I still can't count the rest of the oral meds :-) I have one counter in the kitchen with all of Alex's meds lined up!
Alex had a platelet transfusion today and it is the first since last Friday! We are hopeful that he is starting to make his own platelets. He had a red blood cell transfusion on Monday, and it had been 17 days since the previous one!
Alex and Emily have been having fun doing Alex's physical therapy, or exercise class as Emily calls it. Alex says that his legs feel stronger. Of course, it is a battle to get him to do his exercises on the days the physical therapist isn't here.
Emily's antic this week was trying to lasso me with her "hoop 'd' hoop", also know as a hula hoop. This week Emily's strawberry chap stick migrated from her lips to her whole face. It was an interesting sight. Emily and I are going to the Dragon Tales show in Chapel Hill tomorrow. I haven't had the opportunity to take Emily to any live performances, so I hope she can sit through the show. I have visions of her trying to go up on stage with the Dragons :-)
The kids and Steve did make me a cake. Alex kept calling me to help and I told him since it was my b-day he and Daddy would have to figure it out. Now, how hard is it to make a cake from a mix??? Debbie, thank you so much for the Mrs. Beasley's cake. It is incredible! Thanks to everyone for the b-day wishes. I think it's time to start counting backwards...
Hope everyone has a sunny week. Thanks for checking in on us, and don't forget to sign the guestbook!!!
Jill
Wednesday, March 12, 2003 10:27 PM EST
DAY +120
*CHECK OUT ALEX'S QUILT OF LOVE...CLICK ON THE 3RD LINK*
Hi Ya'll-
Yesterday was our long clinic day, and Steve was in Washington D.C. for the day for a meeting, so I had Emily with me for 6 hours. I have to say that she was really good. We got there early (8:50 a.m.), and one of the nurses was giving me a bad time. She wanted to know if I had looked at my watch and knew it was before 3:00 p.m. I rarely show up in clinic before 2:00 p.m. I joked that I have my days and nights mixed up :-)
Alex woke up with an itchy rash all over his body this morning and a nasty headache. The rash is a result of not taking his Cyclosporine for the last few days. His levels were really high, so they were waiting for the levels to drop before they gave him more. Since it was still a mystery today as to why the levels are high, they switched Alex to another anti-rejection drug called FK506. Cyclosporine is the hairy drug, the one that causes the bushy eyebrows, mustache and beard. Dr. K said that Alex's facial hair will disappear in about three weeks. I guess Alex will have to wait until puberty to grow a mustache again!
On Sunday we went to Build a Bear workshop. One of the transplant mom's set it up. They opened early for us before the mall opened. Alex made a Koala bear and named it Tom and Emily made a black bear and named it Walla. Emily's bear needed clothes, but Alex didn't want clothes for his bear. It was great to get out of the house for a little while. I have been trying to come up with other places we can go, but we are so limited because of germs. I want to go to one of those places where you paint pottery and Dr. K said that the dust from the pottery can be a problem. Isaiah's mom Pat came up with the idea of going to the Primate Center, and Dr. K said absolutely no animals. Apparently monkey's can have viruses. Someone else wanted to go the the movie theatre before they open, and Dr. K said that was pushing it. It is so hard to find safe activities for the kids. We've been doing a lot of fun things at home, but it is nice to get out of the house every once in a while.
I want to thank my friend Deborah for reminding me that I'm going to be a year older next week :-( I had actually forgotten about my b-day until I opened my mail! The kids want to know what kind of cake I want. Does that mean they will do the baking???
This weeks Emily's antics has been canceled. Tune in next week for more exciting tales!
Hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Wednesday, March 5, 2003 10:20 PM EST
DAY +113
Hi Ya'll-
*CHECK OUT THE NEW PICTURES ADDED TODAY*
Alex had a great birthday. He said that the presents were the most fun, but he liked the Scooby decorations and cake too :-) Thanks to everyone for signing his guestbook. He really gets a kick out of reading all his messages.
On Sunday we finally went to see the oreo cows. Alex wanted to stay home with Steve, so I took Emily and my mom and brother. It took us 1 1/2 hours to get there. We were stuck in a traffic jam for 45 minutes. They were moving a house that was blocking all TWO lanes. We aren't sure if the house fell off into the road, or if it was just moving at warp zero! One would think that this kind of activity should take place at 2 a.m., not 2 p.m. Traffic was backed up for miles and miles. Anyway, Emily liked seeing the cows. She said they looked like sheep and smelled like pigs.
On Sunday night my mom started coughing. I made her put on a mask even though she was insisting it was allergies. She woke up Monday and said she didn't feel well, but wouldn't admit she had a cold. I can't have anyone who is sick around Alex, so I was really stressed out. By Monday afternoon my mom decided that she should go home. By this time, she couldn't make the last flight out of Durham, so I made her stay in a hotel. Steve dropped both my mom and brother at the airport Tuesday morning. We were sad to see them go. My mom was planning on staying until next Monday. Emily was so funny. She told my mom that it was o.k. if she went home because Grandma would come. Grandma isn't planning on coming until the beginning of April!
We had our looooong clinic day yesterday. We were there from 9 a.m. to 5 p.m. Everyone showed up at the same time and it was standing room only. They work on a first come first served basis, so everyone tries to get there early. They are lowering Alex's platelet parameter to 10 which hopefully means less transfusions and less clinic visits. The hope is that Alex will make some more of his own platelets. They are also switching one of Alex's IV meds to oral. It is a big win since the IV is twice a day for two hours each time. They discontinued another IV med, so Alex is down to 3 IV meds. Don't ask how many oral meds he is on. I joke that I can't count that high :-) Alex started physical therapy this week to strengthen his legs, ankles, and hips. He is very weak right now. I think he is going to enjoy his exercise sessions.
Alex is doing really well with his school work. He sees his teacher once a day for an hour. I know I confused some of you when I said he goes to school. He won't be able to attend a traditional school until one year post transplant at the earliest. Alex has been getting a lot of homework lately, but I think it is good for him. I'm so proud of him for keeping up with his school work. It's not always easy, especially when he isn't feeling great.
I hope everyone has a sunny week. Thanks for checking in on us and don't forget to sign the guestbook.
Saturday, March 1, 2003 1:53 PM EST
HAPPY 7TH BIRTHDAY ALEX!
DAY +109
Hi Ya'll-
Yesterday was the first half of Alex's birthday according to him. He was worried that his birthday would be ruined since we lost power for 4 1/2 hours on Thursday. The ice storm knocked it out AGAIN. We had visions of being without power for days like we were the last time. I was calling around trying to find a hotel room all afternoon. I finally got one, packed up the car and the kids, got to the hotel, and Steve called to say the power was back on. I was so thankful! We continued on to Isaiah's for dinner. Thanks Pat, we all had a great time.
We had to go to the clinic on Friday for platelets and red blood cells. We ended up waiting 2 1/2 hours before Alex got hooked up. They kept telling him that they were cleaning a room for him and then they would give it to someone else. I told them that his blood pressure was going to go up. He was getting really upset. After Alex finally got hooked up, they came in and sang Happy Birthday and gave Alex a cake size cookie and a present. I joked with them that now I knew why they kept us waiting for so long. One of the nurses replied that there is a method to their madness.
My brother and my mom arrived last night. This morning Emily was up at 7:30 a.m. waking everyone. She was a little chatter box. She wanted to know where the party hats were and she had her party dress on by 8:00! Alex wants matzo balls for dinner, so that is what we are having tonight. He had ravioli for dinner on Tuesday, Thursday and Friday and for lunch on Wednesday. I guess it is safe to say that he is doing o.k. with the lactose. We made a birthday cake and are going to decorate it when it cools. Alex had a present opening session this morning and is now happily playing with some of his new toys. Since there are so many presents, he decided to open some later.
Thanks to everyone for the birthday wishes and presents. I hope everyone has a sunny weekend. Thanks for checking in on us and don't forget to leave a birthday message for Alex in his guestbook.
Jill
Tuesday, February 25, 2003 9:58 PM EST
DAY +105
Hi Ya'll-
We had a pretty good weekend. Alex didn't need to go into clinic on Friday or Saturday. We can't remember having two days in a row off, so we were pretty excited. We didn't go anywhere on Saturday because of the torrential rains. Alex said there was a blizzard :-)
Yesterday we went in for Alex's 100 day testing. He had a pulmonary function test, and Echocardiogram, and a chest x-ray. We were done earlier than expected, so we dropped by the unit to say "Hi" to the nurses.
We had our weekly visit with Dr. K today. Alex had to go in for an ultrasound and have 100 day labs drawn before he ate anything, so we got there at 8:30 this morning. Alex usually sleeps in until 10:30 or 11:00 a.m., so he wasn't happy to be dragged out of bed and told he couldn't eat. All Alex talks about is food, and he is even singing about it too! Dr. K said he could try ravioli this week, so I had to stop on the way home to get some. Boy did he enjoy dinner :-)
It looks like the Platelet Eater is slowing down a little bit. He has been going for three days between transfusions. A blood test also showed that Alex is making some red cells. We still have to do daily lab draws, and will still be at clinic a lot, but things are looking good.
Alex's 7th birthday is on February 29th. Since there is no 29 on the calendar this year Alex thinks he should celebrate on the 28th AND March 1st! My mom and brother are coming in to help us celebrate. The kids are excited to have guests again. If the weather cooperates, the kids still want to go see the oreo cows. If we ever get there, I promise to take pictures. Speaking of pictures, I added a new picture of Alex and his friend Isaiah. Check it out.
Since everyone has been asking for Emily's Antics, here goes. I had to take the toilet paper away from Emily since she used a whole roll and clogged the toilet. She keeps telling me to put it back out, but I don't trust her. Now I just give her a few squares of TP at a time. She also got into the colored glue and dumped half of a bottle out on the counter. For this reason I only buy washable art materials :-)
Hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Friday, February 21, 2003 9:37 PM EST
DAY 101!!!
Hi Ya'll-
Today is Day 101 post transplant. In the transplant world Day 100 is a BIG day. I was going to update yesterday, but I fell asleep on the couch after dinner :-)
We have been at the clinic everyday this week. We finally got a break today. Alex needs Magnesium infusions every 3 or 4 days. Steve and I were wondering why we couldn't do them at home so we e-mailed Dr. K who said that would be o.k. However, she is starting him on daily 2 hour infusions. Well, at least he has 3 lines! Some kids take PO (oral) magnesium, but it can cause diarrhea, and they don't want to do anything to upset Alex's GI tract since he is still losing blood.
Alex was soooooooo happy to get a day off. I know how he feels because I told him I would have started crying if we had to go in today. It was nice to just hang out with both of the kids. Emily was so much better today. I guess some of her antics are just rebellion at having to go to clinic so often. Today the kids were really into scratch magic drawings. They were so cute snuggled on the couch doing their drawings.
Hope everyone had a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Tuesday, February 18, 2003 10:27 PM EST
DAY +98
Hi Ya'll-
We had "weather" this weekend. Steve took Alex in for Platelets on Saturday before it got really bad. Saturday it rained, sleeted, and snowed. On Sunday Steve was going to take labs in and five minutes after he left he returned. He said it wasn't worth digging the car out. We paged Dr. K who said it was o.k. to skip labs but that we had to go in on Monday. On Monday the roads were really bad, so we decided not to go to clinic until the afternoon. That was a bad move as Alex's hemoglobin had dropped to 6.2 and he needed two bags of red blood cells. We were in clinic until 7:30 p.m. and had to be back there today at 9:00 a.m. if we wanted to have any chance of getting out of there in a reasonable amount of time. Dr. K sees 30+ patients on Tuesdays, and clinic days can be really long. We were lucky today and got out around 2:15. One of the nurses saw us leaving and jokingly asked us if we knew it was Tuesday!
I decided I need to add a new section on this web site called "Emily's Antics". She has been getting into trouble constantly. Most of the trouble is caused by her natural curiosity. The other day she took one of Alex's key chains and put the metal part of it into a light socket, melting the key chain and burning the socket. She also managed to get her leg stuck in the slats of the kitchen chair. Steve thought he was going to have to break the chair to free her. I'm not sure how he got her out, but the chair is in one piece. All in all, Emily has been really good. I had her at clinic with me last week for 6 hours on Tuesday and 5 hours on Friday. I asked her if she wanted Nana or Grandma to come take care of her and she said NO! She wants to go to clinic with her brother and her mommy. I keep telling myself it WILL get easier!
Hope everyone is having a sunny week. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Thursday, February 13, 2003 9:32 PM EST
DAY +94
Hi Ya'll-
So far we have had an uneventful week medically. Our weeks are always eventful :-)
Emily gave up her nap this week forcing us to figure out what to do with her when I'm at clinic with Alex. Steve was working from home while she napped in the afternoon. I had her with me at clinic on Tuesday for 6 hours. Need I say more??? One of the volunteers that helps out with Cell Mates is a student at Duke and she is interested in babysitting, so hopefully we can work something out. Incidentally, she is from California :)
Yesterday I dropped Alex off for school and took Emily to the park. It was empty until we were getting ready to leave when a mom and three kids showed up. Being the paranoid sort, I asked her if her kids were sick. She looked at me strangely and asked why. Then she says her son is sneezing a bit, but doesn't know if it is allergies. We were on our way out when her son walks up and starts coughing up a storm. Now, last time I checked coughing counted as being SICK!
Alex's buddy Isaiah came over to play today. The first thing he asked Alex was what he liked to eat. A discussion about food followed. It was too cute. They had fun playing a new game called Phase 10 dice and video games. I took some pictures, so I'll attempt to get them up soon.
Since Alex is still transfusion dependent, is on 5 IV medicines, and we go to clinic at least 5 days a week, we have decided to stay in North Carolina through May. We will re-evaluate the situation then.
Hope everyone has a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Friday, February 7, 2003 11:02 PM EST
DAY+87
This has been one crazy week. It must be the weather! 0n Monday it was 70 degrees and yesterday it snowed.
At our Tuesday clinic visit, they decreased a few of the meds and eliminated others, and they changed IV steroids to oral.
On Wednesday morning Alex woke up with a really bad headache and then he vomited. He hasn't vomited in a few months, so we were concerned. They gave him an extra dose of steroids in the clinic and put him back on IV steroids. That evening he seemed much better.
On Thursday we went to visit Isaiah. The kids enjoyed getting out of the house :) When we left Isaiah's, I dropped Alex off with his teacher for an hour and Emily and I went shopping. Of course we ended up in the cute little toy store where she convinced me to buy her something :) When I got the kids home, Alex went down for a nap, and Emily who was supposedly napping was actually trying on all her clothes and leaving them in a nice big pile for me. I told my mom and she said I used to do the exact same thing when I was Emily's age. While the kids were sleeping, I ran to the grocery store and when I got home I noticed that something had leaked out of the bag all over the trunk of the car. It was the half and half. Steve said it won't start to smell until it defrosts! Guess I now have a reason to get the carpets in the car shampooed.
Now for Friday. We were supposed to meet with Dr. K at noon. At 11 a.m. I was trying to get Alex up. He said he didn't feel well. When he got up he was dizzy, nauseated, and he started foaming a little at the mouth and saying he needed oxygen. We ended up calling 911. I really thought he was going to pass out. By the time the paramedics got here, Steve was on the phone with Dr. K who said if Alex was conscious to bring him into the Day Hospital and not go by ambulance. She didn't want him to go to the ER. It turns out his hemoglobin was down to 5. They normally transfuse when it gets down to 8. It has never been this low before. After 2 units of blood, platelets, steroids, antibiotics, magnesium, and lasix, we were able to go home. I was really thankful that we were able to go home since the first thing they told me when I got to clinic was that they were going to admit Alex and to call Steve and tell him to pack his bags. We have to go in everyday through Tuesday, but that is a lot better than being inpatient!
So for those of you who want to know when we are going home, we don't know. I told Steve after this little scare that I'm staying here a year post transplant. Maybe when I calm down, I'll change my mind. When I told the nurse that I pretty much knew Alex's symptoms were from low hemoglobin but I didn't know what to do Alex said, "you get the kid to the clinic fast!"
Hope everyone has a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Monday, February 3, 2003 5:57 PM EST
DAY +83
Hi Ya'll-
We had a pretty amazing day yesterday. Alex met with John Beltzer from Songs of Love (www.songsoflove.org) and really enjoyed himself. John played the piano in the Children's Health Center and had Alex tapping a few notes. Alex can't wait to get his song.
Now, for the small world effect. John's chauffer over to the CHC to meet us was Sally. She gave me her name, and when I wrote it down, I realized that I had her number at home because her daughter Rachel was interested in being a big sister to Emily. So, I didn't have to call her, I met her instead!
Later that evening I went to the recording of Alex's song. I dragged my friend Pat along as videographer. It was an incredible experience to hear 150+ people singing the chorus of Alex's song...When it comes to making you smile, He's the only one for the job, He's the one and only Alex Schwab, Wherever he shows up, There's a cheering mob, They're shouting out his name, Alex Schwab! We want to put the song on the website, but we need to figure out if that is possible. I think it will be on some web site, so I'll keep ya'll informed.
Medically, Alex is doing pretty well. We are hoping that clinic visits will become less frequent. We are still going to clinic 5 out of 7 days a week. But, we didn't have to go today. Well, we went to the CHC for school and I took Emily to the playground. It was about 70 degrees here today. It felt like home!!! We have a meeting with Dr. K on Friday to discuss options for going home. More on that next week.
Thought I'd finish this update with a good laugh. Princess Emily told me that Daddy needs to buy a car and give her the keys. Steve said she wants the car so she can go shopping. Help, I think I'm in trouble. Emily is only 3!
Hope everyone has a sunny week. Thanks for checking in on us, and don't forget to sign the guestbook.
Jill
Saturday, February 1, 2003 10:10 PM EST
DAY +81
Hi Ya'll-
It has been a pretty good week, but we haven't had a break from clinic until today. We never got to see the oreo cows last weekend since Alex had to go in on Sunday for red blood cell and platelet transfusions.
We had a good visit with Uncle Mike who left on Wednesday. Our next visitors are my mom and brother who are coming in for Alex's 7th birthday at the end of February. Alex is a leap year baby, so he will only be 1 3/4 this year :)
Since we had a break we went to Raleigh today to get our hair cut. You might ask why we went all the way to Raleigh, so I will tell you :) When Alex was inpatient on the unit, stylists from the Samuel Cole Salon would come every other week to cut and style our hair. It was sooooo nice, especially when you are impatient and can't get out. We liked the way they cut our hair and we want to support them since they are doing something that is so nice for all the BMT families. Thank you Jack, Abby and Maggie!
While in Raleigh we stopped by to visit with cousins Sandy and Howard and their dog Pisher. Emily just loves going over to visit, and we all had a nice time visiting and getting out of our house!
Tomorrow John Beltzer from Songs of Love is going to record a song for Alex here at Duke. You can check out the organization at www.songsoflove.org I hope to go with my friend Pat (Isaiah's mom) and video the recording session. John would like to meet with Alex, so I'll let ya'll know how that goes.
Hope everyone is having a sunny weekend :)
Jill
Monday, January 27, 2003 at 10:26 PM (EST)
Day +76
Hi Ya'll-
I have to share a funny story about poop! On Sunday they told me they wanted to culture Alex's poop. I was supposed to go home with a "hat", one of those things you catch the poop in. Well, I forgot to take one home. The only time they want a sample is if it is fresh and I can run it in within fifteen minutes on ice! Well, this morning Alex decides he has to go, and I have nothing to collect it in. I get one of those disposable Glad containers and tell him to poop in it. He thought I was nuts and wouldn't go. Meanwhile, Uncle Mike was getting ready to rapidly transport the sample. He was going to be the poop patrol, putting a flashing red light on top of the car! Lucky for him the mission was scrubbed :)
This afternoon I get to the clinic and ask one of the NP's for a "hat" and she comes out of the supply room with gloves, a specimen container and a wooden stick. She tells me to put toilet paper in the water to line the toilet so the poop doesn't sink and to then retrieve a sample. YUCK! It's going to sink for sure! So, later in the afternoon I went into the supply room and "borrowed" a "hat". Shhhhh...don't tell anyone. And, of course, the King hasn't pooped yet. I'm hoping by tomorrow they will change their mind on this lovely sample :)
Alex watched a little of the Super Bowl with Uncle Mike yesterday. Steve decided that since Alex is big and buff from the steroids that he should be a tackle. Alex thought it was a great idea. I hear tackles don't have to move too fast, so maybe that would be Alex's speed!
Tomorrow is normally our long clinic day, but since Dr. K is not going to be there, we hope it is a shorter day. I'm taking Emily in for Cell Mates, an art group for Transplant Kids and their siblings. All the kids have to wear a mask and today Emily told me that she isn't sick so she doesn't need one :) Hopefully she won't put up a fight. She is usually pretty good about it.
Hope everyone is having a warm week. It is still cold here. I still can't believe that my friend Debbie went to the beach on Saturday! It has been in the 80's back home.
Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Friday, January 24, 2003 at 11:14 AM (EST)
DAY +73
Hi Ya'll-
We have snow again!!! Emily had fun playing in the snow yesterday. She make snow angels, got soaked, and didn't care one bit. Today it was 12 degrees when Steve left. The king of food has declared that he is NOT the king of snow :) He prefers warm temps. He now wants to go on a Disney cruise because they have all you can eat food! On Tuesday they decreased the steroids again, and the king is slowing down a little :)
Uncle Mike is coming to visit tomorrow for a a few days. The kids are excited and can't wait to see their uncle. Alex loves to wrestle with him, so I'll have to make sure he doesn't get his line pulled out! We're hoping that the weather warms up so we can go to Ferrington Village to see the striped cow. Sounds interesting! There is also a candy store that Alex thinks should be the first stop :)
I just got a call that we don't have to go to clinic today. Alex's platelets are at 30,000 today and they are now transfusing if they are under 30,000. The previous cut off was 50,000. Hopefully we won't have to go to clinic as often.
Hope everyone has a great weekend! Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Sunday, January 19, 2003 at 03:18 PM (EST)
DAY +68
Hi Ya'll-
I've added some new pictures, so take a look. We had some snow on Thursday night. It was already starting to melt on Friday morning, but there was enough for the kids to play in. Alex said it was too cold and went back inside, but Emily had a blast.
We went for a drive today. We were going to go walking about, but it is too cold here. I want to go back to Chapel Hill and walk when it warms up. It is a cute little college town. This area of NC reminds me of Lake Arrowhead. It is very wooded. Emily is always talking about the really, really tall trees.
When we got back from our drive Steve took Alex in for his platelets. He is now known at the clinic as the "Platelet Eater" since he needs a daily platelet transfusion. All I can think of is Pac-Man...just replace the dots with platelets :) Munch, munch, munch. The good news is that Alex's last red blood cell transfusion was 11 days ago! He must be making some red cells.
Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Wednesday, January 15, 2003 at 10:05 PM (EST)
DAY +64
Hi Ya'll-
Alex had his long day at the clinic yesterday. They are going to continue with daily platelet transfusions for now. He also needs red blood cell transfusions about ever 5-7 days. They decreased his steroids. He is slowing down a little, but is still the KING of food. He looks like a cherub :) He has been singing in the kitchen while waiting for his food, it is actually a chant about whatever I am making. When the timer goes off his face lights up and he starts clapping. I will be happy when Alex is off steroids and no longer has food on the brain!
The other day we were talking about groups and what belongs in a group. I asked Alex to think of a group and draw three things that belong in his group. Can you guess the name of his group??? FOOD! and he drew ice cream, a watermelon, and an apple. I was surprised that his group didn't have CHEESE. He can have american cheese, Velveeta, and Kraft macaroni and cheese, but he wants cheddar, mozzarella, and swiss among others.
My mom went home yesterday and we are now on our own for the first time since this adventure in North Carolina began. I think it will work out o.k. Steve will drop Alex's labs off on his way into his office and he will come home in the afternoon. I will take Alex to the clinic while Steve works and Emily naps. So far, so good!
For those of you who asked, Alex got a call from the Black Power Ranger, aka Zack. Alex thought it was really neat that his voice sounded the same on the phone as it sounded on T.V. :)
Hope everyone is having a good week. Thanks for checking in on us and don't forget to sign the guestbook.
Jilll
Sunday, January 12, 2003 at 10:18 AM (EST)
DAY +61
Hi Ya'll-
We were so very excited that we didn't have to go to the clinic yesterday!!! Alex would have done summersaults if he wasn't hooked up to his pumps. Well, maybe Emily would be doing the summersaults and Alex would be watching :)
Alex's bladder infection seems to be getting better. Alex still needs daily platelet transfusions. Today was the first day he didn't need a transfusion in a while. We're hoping that soon he will only need them every other day.
Alex is acting more like himself and has been happily building legos. New photos coming soon. He was thrilled last week when he got a call from a Mighty Morphin Power Ranger. I don't know what he talked about because he told me the conversation was "private". Today after our visit to the clinic Alex hopes to go visit his friend Isaiah at his house.
Thanks for checking in on us and don't forget to sign the guestbook :)
Jill
Tuesday, January 07, 2003 at 98:24 AM (EST)
DAY +56
Hi Ya'll,
Sorry I haven't updated in a while. I know a lot of you check in on us every day. We are pretty exhausted right now. Alex's bladder is still a problem and he needs to urinate every 15 minutes day and night. When they give him a diuretic, he needs to urinate every 2 minutes for a half hour. Alex is tired of having a virus in his bladder but unfortunately it usually takes up to 6 weeks to run its course.
The King of Food is slowing down, but still eating quite a bit. For fun I wrote down everything Alex ate today and read it to him tonight. He said wow, that's a lot of food!
This is what he ate today: 2 bowls of rice krispies, 2, eggs in the whole (2 pieces of bread and 2 eggs), 1 glass of gatorade, 1 large bowl of macaroni and cheese, 1 banana, 1 large bowl of frozen yogurt, 1 glass of milk, 4 cookies, 2 fruit cups, 1 frozen burrito, 1 lemonade juice box, 1 bowl of pasta with butter and parmesan cheese, 1/2 bowl of pea soup, 1 glass of milk, 1 waffle, 1 glass of orange juice, and another bowl of frozen yogurt. He asked for more food when I put him in bed last night and I told him that the food would still be there in the morning!
Alex is obsessed with food right now. It is ALL he talks about. We usually have a chat when he goes to sleep and I asked him if he wanted to talk about something besides food. He couldn't think of anything. He keeps telling me how he can't wait to have his favorite foods with cheese. He then goes on to describe all of his favorite foods. We have been having the same conversation every night for the last few weeks!
Thanks for checking in on us and don't forget to sign the guestbook :)
Jill
Thursday, January 02, 2003 at 11:06 PM (EST)
DAY +52
Hi Ya'll-
Alex's bladder continues to be a problem. I actually went out by myself today and was gone about an hour when I got a call from the NP telling me that I needed to bring Alex in for platelets. He is going to need daily platelet transfusions for the next few weeks to help keep his bladder from bleeding. So much for our 3 day a week schedule :(
Alex has declared himself the "King of Food". If you have any suggestions for lactose free foods, please leave "the King" a message in his guestbook. Thanks for checking in on us.
Jill
Wednesday, January 1, 2003 at 12:04 AM ( EST)
Day +50
Happy New Year to everyone. We just watched the Acorn drop in Raleigh simultaneously with the Ball in New York. Don't ask about the Acorn, we have no idea why they chose an Acorn.
If you are watching the Rose Parade keep a look out for the Give Kids the World Float. The kids will have flower holders with their names on them on the float. Sorry you can't see them since the flowers will be in them, but we think it is neat. We also heard that the kids furry friend Mayor Clayton may be on the float.
Alex is doing pretty well but he has a virus in his urinary tract that is causing him some pain. It has to run it's course which is usually about 6 weeks. Unfortunately there is nothing we can do about it. For the most part he is distracted by figuring out what he is going to eat next. The good news is that we now only have to go to clinic on Tuesday, Thursday and Saturday unless he needs something another day. We were all excited until we realized that he will need platelets tomorrow. Oh well, hopefully we can really get on a 3 day a week schedule soon.
We wish everyone a Happy and HEALTHY New Year! Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Saturday, December 28, 2002 at 10:46 PM (EST)
DAY +46
Hi Y'all-
We've had a fairly uneventful week. Uneventful is GOOD! Alex is a little eating machine from the steroids. I love it when they ask me if he is eating. I reply, "Yes, for 5". He isn't even done with one meal when he is thinking about what he is going to eat for the next. He fells so bloated that he says he thinks he is going to POP. He asked if they could operate and take out part of his stomach. Then he decided that a zipper would be better. I could just unzip him, take out all the food, and zip him back up. The steroids send a signal to the brain telling him that he is hungry even if he has eaten lots and lots and lots. It will take another 3 to 6 weeks to get Alex on a steroid dose so that he only eats for one! They lower the dose each week, but he is going to be on steroids for the next year.
Well, I had to go out today and buy more towels for my 6 year old towel hog. Alex likes to use many towels for his bath. I bought some oversized bath sheets, so hopefully that will cut down on all the laundry :)
I finally got Alex and e-mail address. It's alexschwab6@hotmail.com It is also at the bottom of the page.
Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Wednesday, December 25, 2002 at 07:51 PM (EST)
DAY +43
Hi Y'all-
We hope all of our friends who celebrate Christmas had a nice holiday.
We had a quiet day today and did NOT go into the clinic. We dropped off labs in the morning and they called to say everything looked good. WBC's are up to 3.6! It was nice to spend the day at home. We will be going in tomorrow for platelets. We're hoping to get on an every other day schedule soon. Alex was more himself today and was having fun building his Republic Gun Ship lego from Star Wars.
Alex's friend Isaiah will be getting out of the hospital on Thursday. We hope to be able to go to the unit to throw confetti on him. It is such a big deal when a child leaves the unit that everyone lines up and throws confetti on them. We can't wait to see Isaiah in clinic.
Happy shopping to all of you planning to storm the malls for bargains :) Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Sunday, December 22, 2002 at 09:36 AM (EST)
DAY +38
We are home!!! Alex and Steve were excited to be able to sleep in their own beds. We are happy to all be under the same roof. We got home and the home health care nurse arrived to show us how to use the 4 pumps we need for the 7 IV meds that we need to give at home. Alex is also on 4 oral meds. We were up half the night with Alex's beeping pumps. Hopefully tomorrow night will be a quiet one.
DAY +39
Off to the clinic we went after we finished giving the morning IV meds. When we got there Alex was tired so he took a nap and his oxygen level promptly fell and his blood pressure was up. The NP said that if they couldn't get it under control he would have to be re-admitted. After a call to Dr. K and a dose of a diuretic, things stabilized and we were able to go home around 5 p.m. Whew!
We go back to the clinic every day until the 31st and then if Alex doesn't need blood products every day we might be able to go every other day.
Alex has been eating me out of house and home. He is still getting his "liquid pizza", but I think they are going to decrease it soon. I think part of the food cravings are from the steroids. He looks like a little chipmunk now.
WBC's today were 2.5 and his ANC was 1,700. And the best news of all is that Alex's blood test came back showing that he has 99% donor cells.
On that happy note, I will wish everyone "Happy Holidays".
Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Thursday, December 19, 2002 at 11:10 PM (EST)
DAY +36,
Hi Y'all-
Alex is doing well. His WBC's were up to 1.5 today. Yesterday's ANC was around 800. They took away the pain pump today and Alex did well. They let us out on a pass for 4 hours and we were able to come home. Alex really enjoyed his outing.
Emily is over her cold but she "accidentally" (her word) gave it to Grandma, so we had to send Grandma back to California on Monday. We are managing o.k., but it is really hard having Alex in the hospital and no help. My mom will be arriving for 3 1/2 weeks on Friday.
Alex needed to have his central line dressing changed today and asked me to do it. I almost fell over. He never asks me to do things like that. He usually wants a nurse to do it. He said I do a better job than the nurses :) Of course in the middle of his dressing change Emily informs me she has to go to the bathroom. I have to take her off the unit, so I prayed she wouldn't pee in her pants and finished up with Alex. When you are changing a dressing you need to have a sterile field so you can't just stop what you are doing and come back to it. We made it to the potty on time. Big sigh of relief here!
Day +37
WBC's jumped to 2.3 today. I think that is the highest they have been since diagnosis. Alex spent a lot of the day sleeping compliments of benadryl. He is scheduled to go home tomorrow! He is really excited. We still have to go to the clinic every day until Day +45, but at least we will all be under the same roof! I get to give all the IV meds at home, but at this point I could do it in my sleep.
Hope everyone has a nice weekend :)
Jill
Sunday, December 15, 2002 at 09:32 PM (EST)
DAY +33
Hi Y'all-
Things are moving right along here. Alex's WBC's are holding steady at 1.2 and his ANC is probably between 500 and 1000. They only do a differential on Monday, so we will get to see what his ANC actually is tomorrow. They say that Alex can go home as soon as he is off the pain medicine. They started him on Methadone today to help get him off of the morphine pump. We went for a walk off the unit today and found a playground that is just for pediatric patients and their families. We had the place to ourselves and sat outside and enjoyed the nice weather. Emily is feeling better but is not yet 100%. Grandma feels like she may be getting Emily's cold. I hope she is o.k. so that Alex can come home.
We had visitors from the Hendrick foundation today. They brought a ton of presents for both Alex and Emily. Their visit and all the cool stuff Alex got brought a smile to his face. He hasn't had a lot to smile about lately since he has been feeling so yucky so it was nice to see him smiling. He was even joking that they brought so much stuff and we didn't have a lot of space so we might have to store some of it in the bathroom :)
Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Wednesday, December 11, 2002 at 09:39 PM (EST)
DAY +29
Hi All-
Alex has engrafted!!! He is doing really well and they are trying to wean the pain medication and are switching some of the drugs he takes intravenously to oral ones. Alex was given a 2 hour pass today to leave the unit. He really wanted to go home, but unfortunately Emily has a 102 fever. Alex can't go home until both the fever and symptoms (she has none at the moment) are gone for 48 hours. We drove around for about 10 minutes when Alex decided he wanted to go back to the hospital. We can probably get passes for the rest of the week, but we have nowhere to go :(
Nurse mom was at it again today. I changed Alex's central line dressing and did a great job! I also changed the caps on his lines and flushed them. Alex's nurse today said that I must have done this before. I had flushed his PICC line once a day for 8 months, so I am pretty good at flushing lines. I had also given chemo at home. Changing dressing and caps is new to me, but it was really easy. They won't let you go home until you can do dressing and cap changes. I also have to draw blood. That is easy too. Some of you might remember that I almost passed out the first time I had to flush Alex's line. Well, I think I've come a long way and deserve an honorary MD at this point.
Alex received a package today from his friends at CHLA. Thanks to all of you there who are thinking of us and following Alex's progress. We miss you! Alex said to tell Rhonda and Luz that they have a California Pizza Kitchen here. He can't wait until he can have lactose again! He also can't wait to use his new camera to take pictures of everyone here to add to the picture book. Alex is making a card to send to y'all. I don't know when he will finish it as art is not his favorite thing. Can one of you send me the address I can send it to at CHLA?
Thanks to everyone else (you know who you are) who has sent us stuff. It is greatly appreciated. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Monday, December 09, 2002 at 10:44 PM (EST)
DAY +26
WE HAVE POWER!!! I went home to get some clothes and low and behold we had power. I had called Duke Power earlier in the day and they told me that we wouldn't have power until Wednesday, so I was really happy. Emily and Grandma went to stay with cousins in Raleigh last night. Emily had a good time and made friends with their dog Pisher. When Emily told me the dog's name I couldn't stop laughing. Apparently it is a small dog, and Emily thought it would be fun to try to climb on it like a horse. They had to tell her that the dog was old and she would crush it. Since Emily only weighs 30 pounds, I have to wonder how much the doggie weighs.
Alex is doing well. His WBC's have been up to .8 and his ANC was 504 the other day. It needs to be over 500 for 3 consecutive days for engraftment.
DAY +27
WBC's are .9 and ANC is 600! Dr. Martin thinks Alex will be fully engrafted by Wednesday :) They did a blood test today to see if the cells are the donor cells. It takes about a week to get the results. We still have a few issues to work out before Alex can go home. I think Dr. Martin was overly optimistic last week when he said we would be getting out of the hospital this week. Alex needs to be off of the pain meds and his oxygen levels need to be higher at night. He also needs to be eating more. Right now he is eating Corn Pops. That is the food of the week. I'm sure that next week it will be something different.
Thanks for checking in on us and don't forget to sign the guestbook.
Jill
p.s. - if you missed my updates about the ice storm you can check out the previous journal entry
Friday, December 06, 2002 at 07:13 PM (EST)
DAY +22
Hi All-
It's snowing here!!! I was like a little kid. I dragged a sleeping Alex over to the window to see the snow. He could have cared less. Emily on the other hand couldn't wait to go out and play in it. Neither of the kids had ever seen snow before. Steve and I lived through 5 winters in Pittsburgh, and we don't miss living in the snow. It's amazing how the whole state of North Carolina shuts sown at the mere mention of snow. Steve tried to get back to the hospital this afternoon and finally turned around because he had gone 3 blocks in 45 minutes. He said it wasn't the road conditions, but the drivers. People just don't know how to drive here when the white stuff starts falling from the sky. Steve did make it back this evening and I made it home. It is now raining, so I might be ice skating back to the hospital tomorrow morning!
Alex's WBC's were .4 today. Not much of a change from the .5 yesterday and the .4 the day before. Alex went two half marathons today :) We walked 10 laps twice. I think that works a little better. We both weren't as tired as when we did 20 laps at once yesterday. Alex is still not doing much, but he did enjoy building some Harry Potter legos that Grandma gave him for Hanukkah.
I hope it is warmer and dryer in your neck of the woods. Tune in tomorrow to see how I got back to the hospital :) Thanks for checking in on us and don't forget to sign the guestbook.
Jill
DAY +23
Hi All-
Well, it was an interesting drive back to the hospital. Trees and power lines are down all over the place, but the roads were drivable. Quiz for the day... if you are at a traffic light that is out do you A) continue full speed ahead B) slow down but do not stop or C) stop? Well, if you are from NC you choose A) drive full speed ahead. I have never seen anything like it. Of course I choose C) STOP!!!
Oh, by the way, we lost power last night around midnight. It was a cold night. Emily got up and said that her hands hurt. I told her to put on her mittens and she told me they were for outside. I had to fight with her to get them on.
Somehow my MIL got us a room at the hotel across the street. We are going to be there for a while since they say it may take until Wednesday to get the power restored.
DAY +24
White blood cells are up to .6 and ANC is 350!!! Grow cells grow!!! Alex is feeling a little better, but says he still hurts a lot. He was happy that I decided not to give him a bath today since there are no towels. They said no clean linen until the power is restored whenever that may be. We are thankful to have a warn uncomfortable bed to sleep in :)
The roads are still a mess with downed power lines. We made it home today to pick up some clothes, but were detoured on the way back to the hospital. Traffic is a mess, there is no gas, and we are down to 5 gallons, and food is hard to find. This ice storm has sure been an experience.
Alex is visiting with his best buddy now, and he needs to leave, so I'm going to go drag Alex out for a walk.
If I don't update for a few days, don't worry, it is hard to get computer time here with one computer for 16 families.
Stay warm. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
p.s. - I don't have time to proof this, so I hope I made sense
Tuesday, December 03, 2002 at 10:57 PM (EST
DAY +21
Hi All-
White cells were at .4 yesterday and .5 today. I hope we're on a roll! Alex is playing a little more but is still grouchy from the steroids. I told him he seemed to be feeling better and he replied, "no I'm not". Back pain is still an ongoing problem. I hope as the white cells come in that the pain diminishes.
Alex decided to walk a marathon today. He dragged me up and down the halls for 20 laps this morning. He walked for an hour. It got to the point that the nurses started laughing every time we walked by them. They couldn't believe that we were still going and going and going. (just like the energizer bunnies :)) Personally, I think they should have been cheering. I collapsed when Alex finally decided to stop. He collapsed too!
Alex did a great job on his school lesson today and he visited with the child life specialist. She read him the story "Alexander and the Terrible, Horrible, No Good, Very Bad Day" He said he could relate to it :)
Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Sunday, December 01, 2002 at 11:03 PM (EST)
DAY +19
Hi All-
Well, WBC's are still hanging out at .3 Dr. Martin will be back tomorrow and he said that he expected Alex's counts to be up when he returned, so I'm hoping to see a big jump tomorrow :) Alex and Isaiah were trying to see who could do the most laps today. Alex went 12 laps this morning, so Isaiah decided to do 15. That motivated Alex to do more laps in the afternoon. He went 20 laps yesterday and today. I need to find out how long the hallways are to see how far we are walking. I'm taking my running shoes tomorrow :) Alex sure wore me out today! In between walks Alex slept for 4 hours compliments of Benadryl. While he was sleeping I heard his pain pump beep and sure enough he had pressed the button in his sleep. Steve says that the PCA pump now runs on autopilot. I took the button away since I didn't want him pushing it in his sleep. He keeps a tight grip on that button when he is awake and asleep. The only things Alex has been complaining about are back pain and being in the hospital.
Now for some happy news. Steve's brother Richard and Kim just got engaged. I know that news travels fast on the Schwab grapevine, but if this news hasn't reached the East Coast, you can say you heard it here first! Richard will be visiting in a few weeks, and the kids are looking forward to seeing their uncle. I was thinking about bribing him to stay with Alex one night while he is here. I figure that he's now had lots of practice sleeping at the hospital when he's on call, so he could sleep thorough the beeping pumps. But, I'm sure he isn't going to want to see the inside of a hospital while he's on vacation.
Thanks for checking in on us and don't forget to sign the guestbook :)
*Check out new photos added this weekend*
Jill
Saturday, November 30, 2002 at 10:01 PM (EST)
DAY +18
Hi All-
Not much has changed here. It is just a waiting game for engraftment. The average period for engraftment is 27 days. This sure is a roller coaster ride. Today Alex was back up to .3 WBC's.
Alex is still having some back pain, but I got him up and walking today and he went 10 laps this afternoon. That is a record for him :) His lungs sound almost clear which is very good. He is still sleeping a lot and isn't interested in much right now. I know that he just wants to feel better.
Check out all the new pictures if you have a chance. Zakkai, the last one is for you :) Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Thursday, November 28, 2002 at 09:14 PM (EST)
DAY +16
Hi All-
Steve broke my computer yesterday, so I couldn't update. I had computer withdrawal last night. Thankfully Isaiah's dad had the repair disc that Steve needed to fix things. Things here are about the same, and the doctor said it
could go on for weeks like this. Alex's WBC's and ANC go up and down and up again. He hasn't been motivated to do much and asked the doctor today when he would feel better. The doctor told him he will start to feel better when his
cells come in. Alex did play with some lego's that Grandma brought today. He also walked a bit with Isaiah. They seem to motivate each other.
Emily and Grandma came over for the Thanksgiving feast that they had at the hospital. It was very festive and there were carolers when we got here. Emily was a bit frightened and Alex said the noise hurt his head.
Tomorrow is the first night of Hanukah. The Chaplin brought us an electric menorah. Emily wants to bring presents over to the hospital and have a party. Hopefully Alex will be awake so we can have some fun. He has been napping in the late afternoon and early evening.
Happy Thanksgiving and Happy Hanukah :) Thanks for checking in on us and don't forget to sign the guestbook.
Jill
p.s. - Photo #2 is new.
Tuesday, November 26, 2002 at 00:09 PM(EST)
DAY +14
Hi All-
Alex's WBC's are at .5 and his ANC is 220. Things are moving in the right direction. Alex told me today that he doesn't like his new cells because they make him hurt. He is still feeling pretty cruddy, but I think he is doing better. Drill Sergeant Mom had him up and moving around a lot today. There is some fluid in his lungs and walking will help get rid of it. He doesn't like to walk because it hurts his legs and back.
Alex used his blo-pens today to make a picture for his friend Isaiah who had his transplant today. Isaiah loaned Alex his Scooby movie and Alex enjoyed watching it. I think he likes the cartoons better.
That's it for now. Tune in tomorrow. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Monday, November 25, 2002 at 09:19 PM (EST)
DAY +13
Hi All-
Alex had a sleepy day today. He had a hard night last night, so I think he was catching up on some zzz's and the benadryl didn't' hurt. I kept dragging him out of bed to do mouth care and his walks and then he would fall right back asleep. He worked with his teacher for about 35 minutes, but I could tell he was having a hard time staying awake. His "best buddy" stopped by to say Hi today and Alex promptly fell asleep. His buddy will come and play with him and give me a break a few times a week. Hopefully next time Alex will be awake :)
I found out today that engraftment is an ANC over 500 for 3 consecutive days. Alex's ANC today was 102 and his WBC had dropped to .3, but the doctor said this is common and it will go up and down. Having an ANC so early means that his bone marrow is trying to do something. He is still having a lot of bone pain from all the growing cells, but they changed one of the meds from one time a day to two times a day and they said that usually helps with the pain. Alex doesn't think he was doing any better today, but I think he was much better, and the rash is subsiding too. Everyone says Alex is doing great.
Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Sunday, November 24, 2002 at 10:49 PM (EST)
DAY +12
Hi All-
Alex's white cells were at .5 today, so they think he might be engrafting! I'm anxious to see what they are tomorrow since they could go back down. Alex is at Day +12, and the average time for engraftment for cord blood transplants is 27 days.
Alex has still been having a lot of pain. The doctors say he is dong great, and I'm glad that they think he is doing so well, but I hate seeing him in so much pain. The pain meds don't seem to be working, and they have increased them.
It is a challenge every day to get him to do his mouth care and to walk. Part of the problem is that he gets IV benadryl before blood transfusions and one of his antibiotics. After benadryl I am dealing with Sir Alex the Snoozer Grump! He has been really grumpy from the steroids.
Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Friday, November 22, 2002 at 09:27 PM (EST)
DAY +10
Hi All-
It was a pretty uneventful day today since Alex slept until 3 p.m. He was feeling nauseated and itchy, so they gave him a drug cocktail that knocked him out. He woke up grumpy and itchy. The doctor thinks that he has an engraftment rash and said he wouldn't be surprised if there were some WBC's by Monday! He said he has all the classic symptoms of engraftment...itchy rash, high fever and bone pain. Grow Cells Grow!!!
Hope everyone has a sunny weekend. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Thursday, November 21, 2002 at 09:53 PM (EST)
DAY +9
Hi All-
What a day it's been. When I got to the hospital this morning Alex was moaning in pain. His temperature peaked at over 106 last night. The doctors say this is "normal" for BMT kids and is nothing to worry about. Easy for them to say! He was much cooler today, and felt a lot better after they started him on continuous pain medication. He can also press a button if he feels he needs more.
Alex worked with his teacher today and did a great job. He raced up and down the halls on his tractor (with me running after him with his IV pole) chasing his nurse who was on a tricycle. We must have been quite a sight :) He played UNO and Connect Four with another little boy on the unit, and then one of the nurses challenged them to a game of UNO. His friend Isaiah is coming on the unit tomorrow. I think it will be good for both of them to have a playmate.
Keep saying "GROW CELLS GROW". Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Wednesday, November 20, 2002 at 07:09 PM (EST)
DAY +8
Hi All-
Alex is feeling pretty bad, but the doctors say he is doing well. The fever was down this morning, but was up again this evening. He doesn't have much energy and feels pretty nauseated all the time. Somehow, he managed to do school today and go for a slow walk. He says he just wants to feel better. He has a rash that they think might be the beginnings of GVHD (graft versus host disease). Apparently engraftment comes next. Grow cells grow!!! That's the motto around here.
Tune in tomorrow. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Tuesday, November 19, 2002 at 06:30 PM ( EST)
DAY +7
Hi All-
I didn't update last night because I was tired and not feeling great. I'm still not felling 100%, so I'm staying away from the hospital today. My mom stayed with Alex this a.m. and I took her to the airport this afternoon.
Alex is doing pretty well. His mouth and throat feel much better but his tummy is really bothering him. His oxygen level is still lower than they want it, and he had a little oxygen yesterday. Steve said that his levels were pretty good overnight. Dr. K said that the chest x-ray looked good and if there was something for me to worry about she would tell me.
Alex has been pretty tired today, but was still out on the tractor. He is getting platelets now. They pre-medicate with benadryl, so he is sleeping again. Steve just called to tell me that Alex has a 39.5 (102) fever. At this point they don't know what it is from, but they drew cultures from his lines.
Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Sunday, November 17, 2002 at 10:10 PM (EST)
DAY +5
Hi All-
Alex was pretty chipper this morning. His friend Isaiah stopped by and did a few laps up and down the halls with him. Isaiah will be coming on the unit on Friday. The boys are planning on hanging out together.
Alex is still having throat and tummy pain. The PCA pump gives him control of the pain medicine, so he likes that. He had a chest x-ray this a.m. because his oxygen level was down a bit. The fellow told me that the x-ray was normal for a child post transplant, but that it wasn't normal. He then said it was nothing to worry about. I think I'll talk to Dr. K tomorrow!
It's been raining here for 2 days. It doesn't really bother me since I don't see the outside anyway! It would be nice if the sun would come out :)
Alex received a wonderful warm fuzzy blanket from Alex's chemo angel Babs niece's Girl Scout troop (hope you got all that). He just loves it. It really brightens the room up and the Dr. today said it reminds him of sunny California! Thanks Babs :)
Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Saturday, November 16, 2002 at 07:44 PM (EST)
DAY +3
Hi All-
I couldn't update yesterday since the web site was down last night. Alex did o.k. until 2 p.m. when his throat really started to bother him. They gave him some pain meds. He also had a platelet transfusion since they were down to 16. The low end of normal is 150. They gave him benadryl and the combination of this and the pain meds knocked him out, so he missed his afternoon tractor ride.
Mouth care has been a challenge for Alex since he despises mint and both the toothpaste and one of the rinses are mint. Unfortunately there are no other flavors.
DAY +4
They put Alex on a pump (PCA) today that let's him control the amount of pain medicine he gets. It locks out if he does it too often, but the doctors will know that he needs something stronger. He continues to have a lot of throat pain and his tongue is covered with mouth sores. He wasn't feeling great, but did play blackjack and Racko with me before taking a nap this afternoon. He needed a red blood cell transfusion at 4 a.m. and he had platelets again this afternoon.
I am told that it is going to get worse before it gets better. The mouth sores usually peak at day 7 - 10. Alex is not happy that I didn't warn him that he was going to feel bad after transplant. He says he just wants to be a normal kid.
Thanks for checking in on us and don't forget to sign the guestbook. Have a sunny weekend!
Jill
Thursday, November 14, 2002 at 09:44 PM (EST)
DAY +2
Hi All-
Alex had me running the halls again today :) He said he didn't feel quite like himself and his throat was bothering him. Tylenol seemed to help. He is probably getting some mouth sores in his throat. The doctor said he saw a few sores forming in Alex's mouth, but those don't seem to be bothering him. I was really surprised that Alex didn't need any transfusions today. Platelets were pretty low, so he will probably need a transfusion tomorrow.
I went to a caregivers support group today while the child life specialist played with Alex. It was nice getting to meet some of the other families on the unit. They meet weekly, so if all is well and I feel like being social, I'll try to go.
That's it for now. Tune in tomorrow. Thanks for checking up on us and don't forget to sign the guestbook.
Jill
Wednesday, November 13, 2002 at 09:45 PM (EST)
DAY +1
Hi All-
Alex wore me out today racing up and down the halls on a tractor. He thought it would be fun to see mom run after him pushing his IV pole :)
We have been trying to keep to a schedule and it is working pretty well. Alex has to do mouth care 4x a day and he needs to exercise 3x a day. He also needs a daily bath and he works with his teacher for 45 minutes. We keep pretty busy!
I thought I should mention that a bone marrow or cord blood transplant is NOT a surgery. It is actually a blood transfusion. The new cells went in over 30 minutes and they go right to the bone marrow. BMT Infonet has a good book about cord blood transplants. You can read it on line or purchase it. Their site is www.bmtinfonet.org
Some of you have asked about donating blood in Alex's name. You can just go to the Red Cross and tell them that you want to donate in Alex's name. That's all there is to it! Alex had his first platelet transfusion yesterday. He didn't need one today, but tomorrow he will probably need platelets as well as red blood cells.
Thanks for checking up on us and don't forget to sign the guestbook.
Jill
Tuesday, November 12, 2002 at 10:50 PM (EST
DAY 0!!!
Hi All-
The transplant took all of 30 minutes. Alex was feeling a little tired today, but did get out to walk the halls a few times. He smells like creamed corn. It's from the preservatives they use for the cord blood. One of the nurses walked in, sniffed the air, and said it must be transplant day. Now we wait for the new cells to grow, grow, grow. Cord Blood takes longer to engraft than Bone Marrow, and the average stay in the hospital is 7 weeks.
Alex has pretty much stopped eating, so they put him on TPN (also known as liquid pizza :))tonight. His taste buds were killed off from the TBI. Yesterday he said his cereal was stale (it was fine) and today he said it had no flavor. The trash can ate a lot today. Alex would take one bite of something and throw it out. The only thing that seems to taste good is popcorn. We almost had a crisis tonight because Steve forgot to bring more popcorn in. Luckily the boy down the hall has moved on to Pringles, so he gave Alex some popcorn :)
Thanks for all the prayers and good thoughts. Don't forget to sign the guestbook.
Jill
Monday, November 11, 2002 at 09:17 PM (EST)
DAY -1
Hi All-
I am happy to report that Alex is feeling much better today. He was up and about walking a few times and he even shot a few hoops. They have a basketball net at the end of the hallway. He also did an art project with the child life specialist. Today's favorite activity has been playing with the Play Station 2 game Kingdom Hearts that Dr. K sent over for him.
Tomorrow is the big day. The UCB (umbilical cord blood) is transfused in over 30 minutes. Then we wait for the new cells to grow. During this time Alex is going to need a lot of transfusions. Dr. K told us that he will need approximately 80 platelet and 20 red blood cell transfusions in the next three months. Many of you have asked how you can help. If you could give blood and/or join the National Bone marrow registry that would help Alex as well as others. Alex did not have a bone marrow match on the National or International registries, and there are many others still waiting and praying for a match. Luckily cord blood was an option for Alex. Well, I'll get off my soapbox now!
Thanks for your continued thoughts and prayers. Don't forget to sign the guestbook.
Jill
Sunday, November 10, 2002 at 08:10 PM (EST)
DAY -2
Hi All-
Yesterday morning Alex had a ton of energy and was peddling a race car up and down the halls with me trying to keep up pushing his IV pole behind him. He wore
me out!
He did well with the chemo, but is having a nasty reaction (expected) to ATG, which is a drug used to suppress his immune system. He has hives all over and a fever of 104. He told me that having a transplant "sucks". Needless to say, he wasn't out racing up and down the halls today :(
Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Friday, November 08, 2002 at 10:52 PM (EST)
DAY -4
Hi All-
Alex was admitted today. After his morning dose of TBI we headed to the clinic to be informed that they wanted us on the unit between 11 and 12. Alex started working with his teacher at about 10:45 when a nurse came over and said they wanted Alex on the unit NOW. So, we headed over to our cell. Upon arrival we found that the only storage we were to have (2 bins) were missing. They never did turn up.
Alex ordered lunch and it never came. Then, they sent something up at 1:30 that was not what he ordered, so he had a meltdown. They seem to have a problem with Alex being a vegetarian on a lactose free diet. The menus were delivered for Saturday and Sunday and all they offered Alex for main courses were peanut butter and jelly. I wrote in what he wants, so we'll see if they serve it to him. I hope he doesn't starve this weekend! We sure miss CHLA room service.
It was back to radiation at 3 for Alex's last radiation treatment. After radiation they hooked Alex up to the IV and he won't be unhooked for at least a month. He now gets to drag his IV pole with him on his daily walks around the halls. He has to exercise 3 times a day.
Tomorrow and Sunday Alex will get the dreaded Cytoxin. That is the one chemo drug that always throws him for a loop. Please pray, send good thoughts, etc. that he handles it well.
Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Thursday, November 07, 2002 at 10:25 PM (EST)
DAY -5
Hi All-
Alex is continuing to do well with his radiation. He hasn't been eating much, but tonight Nana made him French Toast and he had Chips and Salsa for an appetizer. I'm still amazed that he has so much energy the day before he is going to be admitted. Right now he and Emily are dancing! I joked that Emily is going to be the Dance Therapist that will come to see him and get him up and about.
I'm not sure when we will end up on the unit tomorrow. When I left today they didn't have a time for me, but generally it is between the two radiation treatments.
We're packing up and cleaning all of Alex's stuff. I'm trying to pack light since I can always bring more stuff in. There is no storage. They give you two bins and I am taking in an under the bed box.
That's it for now. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Tuesday, November 05, 2002 at 10:13 PM (EST)
DAY -7
Hi All-
Alex started his TBI (total body radiation) yesterday and is doing great. He is still eating and feeling fairly well. In fact he and his friend Isaiah were running laps in clinic today. Alex says that they should do laps while on the BMT unit too. Sounds like a plan to me.
We went to the duck pond again last weekend. Alex and Emily love it there. We walked around the pond and fed all the hungry ducks.
That's about all that's happening around here. We spend all day at the hospital so we are pretty tired. Alex wanted to know how things change on Friday. I told him the only difference is that he gets to sleep at the hospital.
Hope everyone has a good week. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Friday, November 01, 2002 at 04:25 PM (EST)
Hi All-
You get two updates in one since I never had time to post yesterday.
DAY -12
Today is the official start of Alex's pre-transplant activities. You count backwards from today (Day -12) until transplant which is DAY 0. He had his radiation and so far so good. We spent a lot more time waiting in the clinic to get his dressing changed yet again. Alex was able to trick-or-treat at some of the nurses stations and he also had fun playing some games they had set up in the Children's Health Center. Tonight is our treasure hunt.
Day -11
Today started out with Steve and I giving 12 vials of blood. One of us might need a line at some point to donate white blood cells to Alex to boost his immune system. They are checking to see who would be a better donor. I volunteered Steve :) Steve was telling everyone what a wimp I am about giving blood and how great he does. I found out later that he turned white as a sheet and almost passed out! Alex had a blood draw today too, but with a line he doesn't feel a thing and has fun helping the nurse push the syringes.
Alex had his 2nd cranial/spinal radiation treatment today and he did a great job. Radiation is very fast. Next Monday he has one more cranial radiation treatment in the morning and he starts TBI (total body radiation) Monday afternoon. He has 9 TBI treatments. He will be admitted next Friday unless he spikes a fever. He has a low grade fever now, but we are just watching him.
Home health care is coming tonight to show us how to use a syringe pump so we can give Alex his anti-nausea medicine at home in the morning and evening next week. We will be at the hospital all day next week since they don't let you go home between treatments. There is a 9 a.m. and a 3 p.m. radiation treatment on Tuesday through Friday.
Hope everyone had a fun Halloween! Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Wednesday, October 30, 2002 at 10:12 PM (EST)
Hi All-
Alex had his simulation done for radiation today and did a great job. They had him face down to make a mold of his face for the cranial radiation. I wasn't sure how this would go because when they did it at Children's he was sedated. The third time was the charm and they got a good mold. Then they had fun drawing lines on his back for the spinal radiation. He got a choice of colors, but since they didn't have yellow he decided he didn't care. They used blue :) He also has a blue plus mark on his head. They told him that it goes with his power ranger costume.
I felt like a rat in a maze today. We headed into radiation/oncology a different way and all the corridors looked exactly the same. I was so happy when I turned a corner and saw the child life specialist waiting for us.
When we were done in rad/onc we made an unscheduled visit to the clinic to get Alex's dressing changed for his line. It was looking great but after he was lying on it for over an hour for the simulation it started to bleed. We ran into Alex's friend Isaiah so they were both happy. We also had to take the tram from Duke South to Duke North. It was good to learn the route since we will be going back and forth daily starting tomorrow. Alex has cranial and spinal radiation on Thursday and Friday and total body radiation all of next week.
Thanks for checking in on us and don't forget to sign the guestbook.
Happy Halloween :)
Jill
Monday, October 28, 2002 at 10:32 PM (EST)
Hi All-
Alex is in remission!!! His bone marrow is clear. His spinal fluid had a few "suspicious" cells, but radiation should take care of them. He starts radiation on Thursday. He has a lot of energy right now and has been running around.
We have been at the hospital everyday since Thursday for a dressing change for Alex's new line. He doesn't like it and says it looks disgusting. I don't disagree with him, but it is looking better and it is temporary. I keep reminding him that it will come out at some point after transplant.
We were able to visit yesterday with a friend of mine and her family who are also here for transplant. Their son who is getting the transplant is 6 months older than Alex and their other son is 9. Alex had a good time playing with both boys :) There are quite a few boys Alex's age that are here for transplant, and he can't wait to make more friends.
Hope everyone has a good week. Thanks for checking in on us and don't forget to sign the guestbook.
Happy Halloween!
Jill
Thursday, October 24, 2002 at 07:06 PM (EDT)
Hi All-
Alex's procedures went well today. He was in a lot of pain right after he woke up from the anesthesia. He says he feels a little better tonight and doesn't want the Tylenol with codeine. They were able to place one line and leave his port in, so he is happy about that. They won't use the port during transplant, but when they remove his central line after transplant, he will be able to use his port. A port is a lot better because it is an internal line. His new line is external and it will make bathing interesting. One of the nurses told me I can wrap his midsection in saran wrap and give him a shower. Hmm... Alex wasn't to sure about that!
Hopefully we will get good news about Alex's LP and BMA tomorrow. I'll update when I have info. Thanks for checking in on us and don't forget to sign the guestbook. Also check out the new pictures that Steve just added.
Jill
Tuesday, October 22, 2002 at 09:02 PM (EDT)
Hi All-
We had a pretty good weekend. We went to the Duke gardens on Saturday and Sunday. On Saturday there were a lot of hungry ducks! On Sunday there were only a few ducks and they seemed pretty full :) We also found a park that the kids liked with lots of climbing equipment. The entertainment of the weekend was when Alex tried to put a diaper on Emily. She finally decided that Alex didn't know what he was doing. She has only been wearing diapers for her nap and at night.
Alex has decided to be a blue Power Ranger for Halloween. Emily is going to be a princess. The kids have already received lots of Halloween stuff in the mail and more is on the way.
A lot of people have asked me what Alex can and can't have on the transplant unit. I'm still learning, but I know that he can't have flowers, stuffed animals, or anything that is not new and can't be wiped down with a special solution.
Yesterday we were able to see a room on the transplant unit. Alex says they are really small. Then Alex met with his teacher. Today Alex had labs drawn and he saw Dr. K. He also met with his teacher. Tomorrow Alex has a pre-op appointment and Thursday is the big day. Alex will have his line placed and he will have a Bone Marrow and an LP. We won't have the results until late Friday at the earliest since Dr. K will be out of town until then.
Please pray, send good thoughts, etc. that Alex's bone marrow and spinal fluid are clear on Thursday. Thanks for checking in on us, and don't forget to sign the guestbook.
Jill
Friday, October 18, 2002 at 09:49 PM (EDT)
Hi All-
Wednesday's appointments went well, but we had to wait and wait and wait. It took forever to see the eye doctor who was so young that I think he just graduated from diapers. The radiation oncologist here has even less of a personality than the one at CHLA. Someone asked me today if I thought he had the personality of a board. We waited for 3 hours to see him for about 10 minutes and he didn't tell us anything that we didn't already know. Alex will start radiation on the 30th and the transplant will be on November 12th provided he is in remission next week.
On Thursday, Alex had a echo cardiogram. It took about 45 minutes, but Alex stayed still. Then he had to go for a full body CT scan. They told us it was without contrast, so when I got there and they told me it was with contrast and that Alex had to drink it, I paged Dr. K. It turns out that she wanted him to have contrast, but in his line. His port wasn't accessed, so we had to go back upstairs for them to access it. We did finally get out of there.
Today (Friday) was a pretty easy day. Alex had an ultrasound of his neck vessels for his line placement next week. He had labs drawn and we met with his teacher. She had been trying to track us down all week.
We have a free weekend and Alex wants to walk around the Duke gardens and feed the ducks. We also found a park that looks promising. I keep taking different roads to and from the hospital in an effort to get to know this area.
I hope everyone has a nice weekend. Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Tuesday, October 15, 2002 at 10:59 PM (EDT)
Hi All-
Today we went to Chapel Hill for the Developmental Testing. Alex did a great job and we were able to leave by lunch time. Alex really liked the two way mirror. Of course I don't think they should have told him that Steve and I were sitting on the other side and could see him. He was a little distracted and kept making faces at us. After he was done with his test, Alex switched places with us and had us make faces at him.
After lunch it was off to the clinic for Alex's LP. Alex had a tough time today. He said it really hurt when the needle went in and he was screaming. Afterwards, he was o.k., but I was still upset. Alex told them that he always got a toy from the treasure chest at CHLA, and wanted to know if he got a toy for doing a good job. They don't have a treasure chest here, but the nurse promised she would find something for him. She came back with Electronic Battleship, and told Alex that they don't normally give out such a big toy. He was thrilled as he was telling the psychologist yesterday that he wanted an Electric Battleship game. I think he decided to leave it unopened for now so he can take it with him for his transplant. All toys and games that we take onto the BMT unit have to be disinfected and there is no way I'm going to clean all those little pegs. I even have to wash Alex's clothes twice in hot water before I can take them in. There are so many rules and regulations regarding BMT that I am on information overload right now.
Last week we had monsoon rains from a tropical storm. We got 3 inches of rain in less than 24 hours. I think that's more than we get in L.A. all year! Today it was in the 50's which is probably the coldest day my kids have ever seen. It also started to rain and being true Californians, we were caught without an umbrella. Thankfully, Duke has an underground walkway from the parking lot to the hospital.
Tomorrow it's off to the eye doctor in the morning and the radiation oncologist in the afternoon. I think we'll take an umbrella! Thanks for checking in on us and don't forget to sign the guestbook :)
Jill
Monday, October 14, 2002 at 04:43 PM (EDT)
Hi All-
We never did find a park over the weekend, but we ended up at the toy store and Grandma bought the kids some new toys so they are happy :) Steve who is a map person was complaining that the maps aren't correct. Every time he tries to follow the map we get lost!
Today was a busy day. For starters, Alex had 12 vials of blood drawn. It was enough to make me want to pass out! Then he had to have a nasal swab done. Luckily he started crying so as the snot dripped out, they caught some for a sample. He said that it wasn't as bad as when he had to have it done at CHLA. Hope I didn't gross anyone out :) Then it was off for a chest x-ray. When we were done there it was off for a EKG and a Pulmonary Function Test. Alex thought it was fun to blow in and out. After lunch we met with the Child Psychologist so she could get to know Alex better.
Tomorrow is going to be a long day. We have to be in Chapel Hill at 8 a.m. for developmental testing. Alex had this done last year to get a baseline before he had cranial radiation. It is basically an IQ test. We should finish up with the testing around 2 p.m. and then it is back to the clinic for an LP without sedation. The NP put a big X on Alex's back so that I can put EMLA (numbing cream) on before we leave Chapel Hill.
When we got home today there was a package for Alex from Uncle Richard with a Nintendo Game Cube. Alex is busy playing Smash Brothers. Thanks Uncle Richard!
Hope everyone has a good week. Thanks for checking in on us and don't forget to sign the guest book.
Jill
Thursday, October 10, 2002 at 05:26 PM (EDT)
Hi All-
I thought I'd better update before some of you start to panic! All is well here, we have been very busy. Alex finished his five days of chemo on Tuesday with no side effects unless you count temper tantrums caused by long days at the hospital!
Alex had a dentist appointment today and everything looks great. Luckily he lost his second tooth yesterday. The dentist told me she would have had to pull it if it hadn't come out on it's own. She said that most kids need some dental work before BMT. I'm thankful that I don't have to worry about Alex's teeth. Alex did a great job with the cleaning and x-rays :)
Alex says he is free for 3 days. He doesn't have any appointments Friday, Saturday or Sunday. Next week is going to be crazy. We have multiple appointments each day.
We have found a street nearby that has some shops and restaurants. We are still looking for a good park and hope to find one this weekend if it's not raining.
Thanks for checking up on us. Don't forget to sign the guestbook :)
Jill
Sunday, October 06, 2002 at 10:45 PM (EDT)
Hi All-
Alex is doing well with his chemo. We have had long days at the hospital, so Alex is complaining he is bored. He can only watch TV and play video games for so long :) Two more days of 4 hour infusions.
It looks like Steve may have talked his way into an office on campus in the department of computer science as a visiting research scientist. He was asked to give a talk tomorrow, but declined. I'm sure they'll rope him into giving a talk soon!
Ethel's cousins who live in Raleigh brought over a wonderful dinner tonight. Alex and I missed them because we were still at the hospital.
Aunt Marilyn is back in town for a day and Alex keeps following her around hoping she will pull more yu-gi-oh cards out of her pockets. That is his favorite card game.
This should be another busy week. Thanks for checking up on us and don't forget to sign the guestbook :)
Jill
Friday, October 04, 2002 at 10:08 PM (EDT)
Hi All-
Alex went for his IV chemo today (506u78, also known as Ara-G). He says he feels fine tonight. We were at the hospital for 8 hours for a 4 hour infusion. They seem to move very slowly here. I hope this weekend it is quicker with not as many people around. It never seems really crowded here, so I can't figure out why we seem to wait so long.
Alex has a lot of appointments scheduled in the next few weeks. He needs to go to the dentist, eye doctor, radiation oncologist and developmental psychologist. He has surgery scheduled at the end of the month to place a central line. They are going to leave his port in if possible, but they don't use it during transplant. He also has another LP and Bone Marrow at the same time.
Yesterday Steve and I did a little exploring. We found a really good place for lunch. Then we drove and drove and drove looking for the Verizon store to get Steve's cell phone fixed. The new mall here is near where we ended up, but we never found it! I think it's 30 minutes from here.
We're getting settled in, but miss California. Steve has decided that we are living in a swamp here since it has been so hot and humid. Last night Ethel (my MIL) said that if anyone needed a sauna all the had to do was go out on the back porch!
Thanks for checking in on us. Hope everyone has a nice weekend.
Jill
Tuesday, October 01, 2002 at 10:39 PM (EST)
Hi All-
We made it to North Carolina! We are settling into our place. We are the world's worst travelers. We were so wiped out on Sunday that we didn't get out until after 3 p.m. Our car arrived on Monday and so did our boxes. We're still digging out!
Alex went in for an LP and Bone Marrow today. The good news is that his spinal fluid is almost clear of leukemia cells. They only saw one blast. The bad news is that Alex has relapsed in the bone marrow. They saw 5-10% blasts and anything over 5% is considered a relapse. They are going to give Alex a new drug called 506u78 for 5 days in a row starting Thursday or Friday (they have to get it from NIH). They will then check the bone marrow in 3 weeks. He will also get weekly LP's. I was wondering where we go on the weekend for treatment and was shocked to find that the clinic here is open 7 days a week. If everything looks good in 3 weeks, Alex will then start chemo and radiation that will get him ready for transplant.
They have a Museum of Life and Science in Durham that a few people have recommended, so we might go check it out tomorrow. I'll try to update more often, but I'm not promising daily updates.
Thanks for checking in on us and don't forget to sign the guestbook.
Jill
Friday, September 27, 2002 at 8:00 PM (PDT)
Hi All-
We are off to North Carolina tomorrow morning. Alex has been off chemo for a week and is feeling great. We are meeting with Dr. K on Monday and on Tuesday Alex is scheduled for another spinal tap and possibly a bone marrow aspirate. He will probably be admitted to the hospital on Tuesday or Wednesday. I promise to update when I can.
I need to thank a few people who have made this move much easier for us. Aunt Marilyn has been very busy getting our place in NC ready for us. Patti has been wonder women, getting us airline seats together when there were none, and finding us faster, cheaper shipping for our 320 pounds of junk, I mean stuff! Tamah brought her kids over to entertain mine and is helping to close up our house along with Linda and my mom. Thank you all so much, your help is greatly appreciated.
Hope everyone has a nice weekend.
Jill
Friday, September 27, 2002 at 8:00 PM (PDT)
Hi All-
We are off to North Carolina tomorrow morning. Alex has been off chemo for a week and is feeling great. We are meeting with Dr. K on Monday and on Tuesday Alex is scheduled for another spinal tap and possibly a bone marrow aspirate. He will probably be admitted to the hospital on Tuesday or Wednesday. I promise to update when I can.
I need to thank a few people who have made this move much easier for us. Aunt Marilyn has been very busy getting our place in NC ready for us. Patti has been wonder women, getting us airline seats together when there were none, and finding us faster, cheaper shipping for our 320 pounds of junk, I mean stuff! Tamah brought her kids over to entertain mine and is helping to close up our house along with Linda and my mom. Thank you all so much, your help is greatly appreciated.
Hope everyone has a nice weekend.
Jill
Sunday, September 22, 2002 at 01:18 PM (PDT)
Hi All-
A lot of you asked how long we will be away from home. Originally, Dr. K told us 4-6 months, but we are now going early, so probably 6-8 months. We are fortunate that Steve will be able to work from North Carolina. At any given time there are usually 10+ people in his company working remotely. His company will pay for DSL, (I'll have that all important computer access), and they will ship him all the computers he needs. I've already told him that he can't bring all 10 computers from his lab :) He was also planning on working with some people at Duke on a project, so now he won't have to travel to work with them. Everyone from Steve's office has been great. His boss is even giving us miles on USAIR if we need them. We're trying to get a ride on a private jet. The people we flew to Orlando with are looking into it. Thanks again Patti! Steve's aunt has found us housing that is 3 miles from Duke. We are going to check with our insurance to see if they have a housing allowance. Apparently some insurance plans will pay something toward housing if you are out of town for transplant. My mother-in-law and my mother will take turns staying with us to help out with Emily. We shipped one of our cars yesterday. Emily wanted to know where the white car was going. Now she is telling everyone that the white car is going on the carrier to the new house. Steve and I are fairly stressed, but the kids think this move is an adventure.
Back to packing. Thanks for checking up on us.
Jill
Friday,September 20, 2002 at 10:13 PM (PDT)
Hi All-
Today was a crazy day. We got a call at 7:30 a.m. asking us if we could leave immediately for the hospital. I did manage to get out of the house an hour later, but we ended up with 2 cars at the hospital since Steve had to wait for my mom to come watch Emily. They were really slow getting labs, and they had to poke Alex twice to access his port. The first nurse missed the target. As you can imagine, Alex was not too happy. The LP and BMA (bone marrow) went smoothly, but Alex was really sick afterwards. We aren't sure if it was from the LP, or the anesthesia. Then it was off to the clinic. Alex's bone marrow looks good, but as expected, there were still leukemia cells in his spinal fluid. We decided that it would be easier to do all of the treatment leading up to transplant at Duke, so we will be off to North Carolina sometime later next week. It was really hard to say good-bye to all our friends at Children's today. We love you and will miss all of you!
Hope everyone has a nice weekend.
Jill
Thursday, September 19, 2002 at 9:43 PM (PDT)
Hi All-
Just wanted to let you know that Alex did not have his spinal on Tuesday. His lungs sounded clear, and a chest x-ray was also clear, but they decided to wait until Friday. He is scheduled to get a spinal and a bone marrow biopsy under general anesthesia. They are doing the bone marrow to make sure that no leukemia cells migrated from the spinal fluid into the bone marrow. Alex is not happy about the anesthesia. He doesn't like the loss of control. He is also not a happy camper since he can't eat after midnight, and he got bumped from a morning OR slot to early afternoon (1:30). And, they are never running on time! I believe that I will be dealing with monster Alex tomorrow.
Alex told me that I forgot to mention Mayor Clayton. He is the big bunny that resides at Give Kids the World. Mayor Clayton tucked the kids into bed one night. It was very cute. We also saw Miss Mary, Mayor Clayton's wife, one night at the ice cream parlor. Mayor Clayton pulled her out by the ears since they didn't have carrot ice cream. Alex thought that was hilarious.
Please pray, send good thoughts, etc. that the bone marrow is clear tomorrow!
Jill
Monday, September 16, 2002 at 1:35 PM (PDT)
Hi All-
The limo ride to the airport was a blast. The kids commented about 50 times how cool it was to ride in a limo. It only took about 20 minutes to get to the Santa Monica airport, and they thought it was too short. If we had gone out of LAX it would have only been a 10 minute ride, so they got an extra 10 minutes. :) The plane was incredible. It had 2 couches and 4 very plush seats. The first thing everyone did was take off their shoes and get comfy. We were traveling with 3 other people and 2 pilots. Everyone was very friendly. Alex spent a good part of the flight talking to the pilots. We joked that they were giving him flying lessons so he could fly us home. I had never been on a smaller aircraft, and I don't like to fly, but I have to say it was a very smooth, quiet, and comfortable ride. I joked with Steve that I want a private plane for my next birthday! Emily was funny when we got the rental car at the airport. She asked, "where is limo car?" At 3, she is already getting spoiled! We made it to Give Kids the World (GKTW) just before dinner was over. We dined at the Ginger Bread House Restaurant. They serve breakfast and dinner there every day.
The kids were up at 6:45 a.m. on Monday, but it sure felt like 3:45 a.m.! After breakfast, Emily rode the carousel and Alex got to push the button to start it. Then it was off to see Minnie and Mickey in the Castle at GKTW and get our picture taken. The kids wanted to explore, so we walked around and found the pool and the train station. Unfortunately the train was not working because they were working on the mini golf course and the train runs through it. Inside the train station is an arcade and Alex liked the remote control boats. They have 6 "stations" with steering wheels, and outside you can see the boat that you are using. Alex liked to crash his boat into Daddy's. :) Every time we turned around there was something fun for the kids to do. We went to downtown Disney for lunch and ate at the Rainforest Cafe. The atmosphere was great. There were lightening and thunder storms, and gorillas and elephants that moved and made noise. We rested up in the afternoon and wandered around GKTW at night. Alex loves the ice cream parlor!
We spent Tuesday at Sea World and took in 3 shows in 4 hours. We saw the Shamu, Dolphin and Sea Lion shows. Alex enjoyed them all. They are a little different than the shows in San Diego.
On Wednesday morning we went to MGM studios for Alex's meeting with Buzz Lightyear. It was raining, and we weren't sure he was going to come out of Al's Toy Barn. The disney people had called me the day before to assure me that they had something special planned for Alex, but something special never happened, and Alex just got his picture taken with Buzz and Woody. Alex enjoyed the Star Tours ride at MGM, and then we headed off to the Magic Kingdom. Alex enjoyed the Tea Cups and Emily liked the Winnie the Pooh ride. The kids had the best time meeting and getting pictures with Mickey, Minnie, Pooh, Eyore, Tigger and Cinderella. Emily wanted to know where Piglet was. We rode the train back to Main Street just in time for the parade, and the kids loved it. The characters kept coming up to Emily and giving her a hug. Piglet tried to get Emily and Alex to dance in the street, but they wouldn't go. I was wondering if they were paying so much attention to my kids because they saw our Make a Wish pins, or if they just thought my kids were cute. :) The MAW pins get you to the front of the line, among other privileges like a free stroller rental, and a free picture. They will also let you stay on the rides more than once, which we thought was great too.
Alex wanted to go back to the Magic Kingdom again on Thursday. He wanted to go on the Buzz Lightyear ride. It was another fun day at Disney.
On Friday we got to see Barney, BJ, and Baby Bop for pictures at the GKTW castle. Emily said she wanted to hug Baby Bop, but when it was our turn she ran straight for Barney. She still loves that purple dinosaur. We went to the Hard Rock Cafe where they treated us to a free lunch. Then it was off to Epcot. Alex liked the Ice House where they have samples of sodas from around the world, but he wouldn't try any! I liked the Watermelon soda from China. We also went to the Living Seas where we saw interesting fish and some Manatees. Steve and Alex went on Spaceship Earth which is the big ball you see when you enter Epcot. On the way to the car, Emily decided that she wanted to ride the monorail. The monorail system is pretty extensive and connects the Disney parks as well as hotels. When we got to the station they saw our MAW pins and asked us if we wanted to ride up front with the pilot. The kids thought it was fun, and they even got a co-pilot license. Alex wants to show it to all his friends.
Give Kids the World is truly a wonderful place. Everyone is helpful, friendly, and always has a smile for you. It is a place where you can forget about your child's illness for awhile. No one talks about their child's illness, everyone is there to have a good time. Alex's favorite place at GKTW was the ice cream palace. He had ice cream for breakfast 2 days. We also had ice cream for desert every night. Emily's favorite thing at GKTW was the carousel. It ran during breakfast and dinner hours, and she always had to go on it.
All in all, it was a fun trip. Unfortunately Alex came back with a cold. I hope it doesn't develop into anything serious or delay his chemo. He is scheduled to go into the clinic Tuesday for a spinal tap and then the following week he will have 2 days of inpatient chemo. We will know more after they do the spinal tap. They might have to delay the spinal until the end of the week because of the cold. I'll keep you all posted.
As always, thanks for checking up on us and keeping us in your thoughts and prayers.
Jill
Wednesday, September 04, 2002 at 2:50 PM (PDT)
Hi All-
I thought I'd start with the good news first. We are going to Give Kids the World in Florida. It is a village for seriously ill children and their families and Alex says, "they have everything a kid could ever ask for". You can check out their web site at www.gktw.org I still can't believe that Make-A-Wish could set it up so fast. The kids are really excited and I'm glad we can go now, even if we melt from the heat and humidity :) We are getting there by corporate jet. Someone Steve works with set it up for us. Make-A-Wish is providing transportation to the airport in a limo!!!
Now for the bad news. At this point, I don't think anyone is really questioning that Alex has relapsed in his central nervous system. The problem we are having is deciding on a course of action. We had a really good meeting with the doctors yesterday and we spoke with our friend at Duke over the weekend. She is good friends with the doctor at Children's, so the two of them will try to work together to get Alex in remission so he can have a cord blood transplant. They don't see eye to eye on everything, so I am hoping that we will feel comfortable staying in LA for the chemo. He will need one to two months of chemo before the transplant. We will be going to Duke for the transplant, if not sooner. Alex is scheduled to have a spinal tap when we return, and I figure they can duel it out when we're gone as to the rest of the drugs they will use to get remission. There is some concern that they won't be able to get remission because Alex has already had all the "big drugs", and his leukemia seems to be resistant. It had never crossed my mind that we wouldn't get remission, so I lost some more sleep last night. We've been under so much stress lately, I hope we can relax and have fun on our trip.
Alex lost his first tooth today. He made me pull it out of his mouth, and he is very happy it is gone. The first thing I did after putting his tooth in the "tooth box" (looks like a tooth) for the tooth fairy (who Alex insists is mom and dad) was call the clinic. I was freaked out about the blood!!! They said it is o.k. since his platelets are good. They might have laughed at me, but at least I felt better calling :)
If there is a computer I can use in FL, I will try to update about all the fun stuff we are doing. If not, I'll update when we return.
Thanks for continuing to keep our family in your thoughts and prayers.
Jill
Friday, August 30, 2002 at 11:14 PM (PDT)
Hi All-
Alex had his LP today around 2:30. He is such as champ and did a great job without sedation. At about 4:00 we got the bad news that there were 10% blasts in his spinal fluid. The onc's are still not sure what to do. Apparently having low blasts 3x in a row is pretty uncommon. They said that if they had seen more cells that they would definitely know what they are dealing with. They have decided to start Alex on maintenance for now for lack of a better plan. Steve and I are scheduled to meet with the doctors who are head of the Leukemia program at CHLA on Tuesday. We also plan on speaking with an oncologist at Duke this weekend who is a family friend. Alex's onc thinks that we should consult with someone else as well.
It was a really hard day because a lot of the nurses who don't know what's been going on kept telling us that today was a big day, starting maintenance. I'm so glad we got to this point, but I just can't feel happy since I know that it is only temporary. The current thinking is that we do another LP and a BMA in 4 weeks. I realize that after talking to everyone next week that this could change. Alex's onc also thinks that Alex should go on his wish trip in the next few weeks. Alex changed his mind about training Shamu, and wants to go to Give Kids the World in Florida. I don't know if it can be set up this fast. Alex's onc said that it can and that he is going to call MAW on Tuesday even though he is on vacation all week. He also said that he'd call us to see how our meeting went. He is such a great doctor and person. I don't think we could have survived all the ups and downs of the last year without him.
A few people have asked why Alex's web page is yellow and blue. Alex's favorite color is yellow. I choose the blue writing because I love blue and gold (CAL), and not *baby* blue and gold (UCLA). GO BEARS!!!
Hope everyone has an enjoyable long weekend.
Jill
Wednesday, August 28, 2002 at 07:30 PM (PDT)
Hi All-
We are happy to all be home. Alex and Emily are so happy to see each other that all they do is fight. Today Alex told me that I was crabby and needed a day off. I told him that I wouldn't need a day off if he would behave himself! I didn't tell Alex, but I'm just happy he has the energy to fight with Emily :)
Alex told me that I forgot to tell you that he is done with his leg shots. After 55 shots, he is soooo very happy to be done. When I realized that he was done with all the heavy chemo on Monday, we decided we should celebrate. Alex's nurse ordered a cake from room service and Alex invited all the nurses and doctors to come by and celebrate with him. When we found out he was going home, he said, "now we have 2 things to celebrate". Thank you Cami :)
Thanks for keeping Alex in your thoughts and prayers. I'll update again after Friday's LP.
Jill
Tuesday, August 27, 2002 at 8:35 AM (PDT)
Hi All-
WE ARE HOME ONCE AGAIN!!! Alex's CT from yesterday was clear, so they released us last night around 8:00 p.m. There was some confusion yesterday morning about doing the CT scan vs doing a chest x-ray. They finally took Alex down for a chest x-ray around 2:00 p.m. Then at 3:30, they came to get him for the CT. By 4:00, I had spoken to the radiologist who said Alex's lungs looked clear. Don't ask why it took 4 hours to get released! I'm just happy to be home :)
The plan is to go in on Friday for the LP (spinal tap). If Alex's counts are high enough, they will give the chemo, if not, they will still probably do a diagnostic LP to look for leukemia cells. Alex says he told the leukemia cells to "take a hike", so they won't find any. I told him that I hope they had taken such a long hike that they could never find their way back!
Hope everyone has a good week. I hope to have a quiet one!
Jill
Sunday, August 25, 2002 at 8:11 PM (PDT)
Hi All-
Alex's temperature is down near normal!!! He is scheduled to get a repeat CT scan of his lungs tomorrow. We're hoping all will be clear. Alex's counts are dropping again, and they don't know why. His ANC needs to be 750 to start maintenance. I hope to have more answers after the CT scan. If it is looking better, they may be able to send us home on IV antibiotics. If his lungs look the same or worse, they will have to do a lung biopsy. They said they have surgery on stand by. I really hope we don't need to do another invasive procedure. Alex isn't acting sick, so I'm hoping for the best.
Alex is always trying to figure out the code to get into locked rooms in the clinic and hospital. Today his nurse told me that he's just trying to crack the code because all I have for him play with are games that are puzzles! Interesting theory. I'm always trying to challenge Alex, and he seems to enjoy the educational games :)
Well, I hope to have good news to report tomorrow night.
Thanks for all the good thoughts and prayers.
Jill
Thursday, August 22, 2002 at 9:27 PM (PDT)
Hi All-
I couldn't update yesterday because the caringbridge site was down last night. Yesterday was a pretty uneventful day. They sent the infectious disease doctors in to try to figure out what is going on. They recommended some tests, including a lung biopsy. Alex's fever isn't spiking, so I hope he is getting better! They are resuming chemo. Alex has three leg shots left, and one IV chemo. Alex is pretty bored since he's in isolation and can't walk the halls. He was jumping around today, and got pretty winded. He has his Play Station and Chai Lifeline gave him 4 new games, so hopefully that will keep him busy for awhile.
The current plan is to monitor him for the next few days, keep him on his antibiotics, and repeat the CT scan on Monday. I was hoping that maybe we could get out for the weekend and go back on Monday, but they don't want us to leave this time until they figure out what is going on. They now think (again) that it is some type of pneumonia, but they just don't know which kind. All the tests they have done have come back negative.
Everyone at the hospital is talking about the fact that I wanted a punching bag last week. Dr. Tishler told some of the nurses, who all had to tell me they heard about my need to punch something. Well, a few days ago I got home, and in the mail from one of Alex's chemo angels (thanks Babs :)) was a "dammit doll" It says, "When you want to Climb the walls, Or stand right up and Shout; Here's a little dammit doll you cannot do without. Just grasp it firmly by the legs, And find a place to slam it: Then as you wack the stuffing out, say DAMMIT, DAMMIT, DAMMIT !@#$ Of course I had to share with everyone at the clinic. The nurses joked that they want one to wave around to let parents know that it isn't a good time to bug them. Dr. Tishler wants to order a case! I have been having fun slamming it around, but no stuffing has come out yet :)
Thanks for all the guest book entries. Alex couldn't believe how many people signed the guest book the other day. He just keep saying, "wow".
Since I don't expect much to be going on over the weekend, I might not update every day.
Jill
Tuesday, August 20, 2002 at 9:58 PM (PDT)
Hi All-
Alex's bronchoscopy went pretty well. They found a lot of fluid in his lungs, which I guess makes for a good sample for the pathologists to review. Hopefully we will know something in a few days. Alex was unhappy with the anesthesiologist. He wanted to tell the Dr.something before they put him under, but got hysterical, so the Dr. attempted to just put Alex under. Alex kept grabbing the line wherever the Dr. had cleaned it with alcohol so that he couldn't put the medicine in. He eventually calmed down and let the Dr. do his job. Alex was also upset that they didn't get me before he came out of the anesthetic. They make the parents wait downstairs, and they come get you when your child is in recovery. I hitched a ride up the elevator with one of the nurse practitioners that I know since the fellow told me Alex was out of surgery and no one had come to get us. When I got upstairs Alex was screaming at the nurse that she couldn't touch him until his mommy was there. The nurse was upset too, since she couldn't leave Alex to come get me. After all of this Alex says, "I'm tired" and fell back asleep.
Let's hope that they find something they can treat so we can be out of jail soon! If they can't find anything and Alex's fever persists, the next step is a lung biopsy. I really hope we don't have to do that.
Jill
Monday, August 19, 2002 at 10:04 PM (PDT)
Hi All-
The CT scan showed that something is going on in Alex's lungs. They can't pinpoint what it is, so they are doing a bronchoscopy tomorrow. This is a test where they put a small camera into the lungs and take some pictures. They also put some saline in and then suction it out to try to pinpoint the type of bacteria, virus, or fungus that is causing Alex's fevers. I think Alex had visions of a 35 mm camera and said he didn't want them to put it in his stomach. Dr. Tishler explained the procedure a little more tonight, but Alex is still not happy about it. It is done under general anesthesia, which Alex doesn't like either. Yesterday Steve was told that we would be there at least another 10 days :( I'm hoping that if they can pinpoint what is going on that we can go home on IV antibiotics. Alex says he wants "nurse mom"!
I'll try to update tomorrow night. If I don't have any new info, I might wait until Wednesday. Thanks for checking in on us. Please sign the guestbook to let Alex know you stopped by.
Jill
Sunday, August 18, 2002 at 9:53 PM (PDT)
Hi All-
Alex is back in the hospital and not to happy about it. We spent 3 hours in the ER, and then they found a bed. Alex is complaining that the bed is to soft, the room is noisy because it has an extra Hepa filter for the child in the next bed with AML, the food if "yucky", etc.
Alex's temp was still 102 tonight. They took him down for a repeat CT scan of his lungs. His counts are great, so if they can figure out the cause of the fever, I'm hoping we can go home.
We went miniature golfing this morning before I realized that Alex's fever had spiked. Alex and Emily had fun. Alex was a little winded, since he hasn't had much exercise in the last 2 weeks. Alex also clobbered Emily with the golf club. He was swinging and she ran into him. She was pretty upset,and has a little bruise above her lip, but I think she'll survive! I joked that maybe it isn't so bad staying home all the time. I could do without the extra excitement.
Stay tuned for more info tomorrow night.
Jill
Saturday, August 17, 2002 at 8:23 PM (PDT)
Hi All-
Alex is happy to be home, but he spent half the day at the hospital. He had to get his Erwinia shot. He is also still running a fever of 101, but they said not to worry until it gets up to 101.5 I think it's my job as a mom to worry! I don't think they will re-admit him since his counts are so good. I figure that we are at clinic Monday, Wednesday, and Friday next week, so if they want to do any more tests, we are already there.
I have a funny story to share. Alex's lips are chapped, and we told him he needed chap stick. I don't think he has ever used any before. Well, I know he had some Scooby Doo chap stick in his room (un-opened) so I asked him to get it. He kept telling me that he had Scooby Doo glue, but no chap stick. I went in there and found it and he still insisted it was glue. He thought we were going to glue his mouth shut since he talks so much and that we were just trying to trick him. I had to chase him all over the house to get some on his lips! Well, he's still talking...
If Alex is feeing o.k. tomorrow he wants to go miniature golfing. His counts are good, so I figure we can go. I'll just have to take my wipes to wipe down the club, ball, and anything else "germy". I also told him he had to wear his mask in the arcade and NO games. He promises not to touch anything.
Hope everyone is having a good weekend :)
Jill
Friday, August 16, 2002 at 1:33 PM (PDT)
Hi All-
WE ARE HOME!!!! They gave us our "get out of jail free pass" (free parking) and we were on our way around noon. Alex is so happy to be home :) He still doesn't feel great, but I'm hoping that being home, eating better food, and sleeping in his own bed will help. They are sticking to their diagnosis of walking pneumonia and he is still on antibiotics for a week. He has to go back tomorrow (big bummer)for a shot. Then it is Monday, Wednesday and Friday next week for chemo and a repeat CT scan. Thankfully this time will be w/o contrast.
Thanks for checking in on us.
Jill
Thursday, August 15, 2002 at 10:03 PM (PDT)
Hi All-
Alex had his nasal swab this morning. It took a few nurses. When I walked in today Alex told me that they told him to breathe but he couldn't since one of the nurses had her hand on his throat. He said he had to remove her hand and he also kicked another nurse. He was really proud of defending himself. I couldn't help but laugh. (Although I did feel sorry for the nurses!) This test didn't show anything.
I thought that they were going to let us go home tomorrow, but they say Alex had a fever at noon today. I think the PCSA wrote the temp down wrong. Every time I asked her what it was she told me 37.4, but she wrote down 38.4 at noon, and 37.9 at 4 p.m. I'm not sure what they are going to do. Alex was crying tonight because he wanted to go home. He has done really well, but I think he's had it and just wants his own bed.
I hope to have good news to report tomorrow!
Jill
Wednesday, August 14, 2002 at 9:57 PM (PDT)
Hi All-
Today was a hard day. Alex had to drink 600 cc's of orange juice laced with contrast for his CT scan. He drank 1/2 and vomited. Then he finished it and we went down for the scan. It was going great until the tech told him that they needed to put some medicine into his line and that it could taste bad and make him throw up. She offered some gum to alleviate the problem. Well, he flipped out. We had to call his nurse down from upstairs and I had to tell him they were only flushing his line. They slapped "SALINE" stickers on everything so he wouldn't know what was going in. He kept saying that he didn't trust them and he didn't believe they weren't putting medicine in. We finally got the scan done and went back upstairs. The scan showed some inflammation of his lungs. They think he may have "walking" pneumonia so they started him on another antibiotic. Tomorrow at 6:15 a.m. they have to wake him up to do a nasal swab to check for a virus. This test sounds really unpleasant, so I won't describe it tonight. His fever is down a little, and his ANC is hanging in there around 1,200.
My friend Tamah came by tonight and stayed with Alex so Steve and I could go grab some dinner. We were gone for about an hour and when we were walking back into the hospital, she called and said, "Alex is done with me". Apparently she didn't know how to battle with the Digimon figures :) Thanks Tamah!
I stopped by the clinic today and Nurse Effie told me that Dr. Tishler liked my idea of having a punching bag for parents. I hope they get one, I think it would be very therapeutic!
I'm still hoping that a lower fever is a ticket out of jail.
Jill
Tuesday, August 13, 2002 at 11:38 PM (CDT)
Hi All-
Alex is still spiking fevers. I was in bed with him today when I felt my arm that he was using as a pillow burning up. I called for the nurse and sure enough he had a fever. The doctor came in a few hours later and said that he ordered a full body CT scan for tomorrow. Alex has to drink some yucky stuff first. The challenge will be to get it into him, and then keep it in him! The good news is his counts are recovering. His ANC was up to 1,112 today :) He started back on his chemo. He got IV chemo and a leg shot. The nurse asked him if he wanted freezy spray or EMLA cream for his shot, and he said, " nothing, just do it" Yesterday when they re-accessed his port (a needle can only stay in for one week w/o being changed), he didn't use EMLA either. He is one brave little guy. He is starting to tire of being in the hospital and keeps asking to go home. It's getting harder and harder to entertain him. Hopefully we can come home sometime this week. We haven't had a stay this long since dx, almost a year ago.
I should have said Alex's big brother from Chai Lifeline! Alex is my oldest :) Chai Lifeline is an organization that helps families dealing with illnesses. Their motto is "fighting illness with love" They have been wonderful. Emily has a big sister that comes over once a week to play with her, and Alex has a big brother that does the same. They have also sent what I call " boredom busters", or fun stuff to do when we were home and couldn't go out. Tonight, they brought dinner to the hospital for me and Steve. It was one of the best meals we have eaten in a week! Alex enjoyed some of it too. Thanks Randi :) Steve's friend Patti from the office brought us food over the weekend, and that was great too. Thanks Patti :)
Thanks for checking in on us. Please sign the guest book. Alex likes me to read all the entries to him.
Jill
Monday, August 12, 2002 at 9:00 PM (PDT)
Hi All-
I was hoping to be able to tell you that Alex's fever was down. He had a 37.9 most of the day, so I was pretty happy. Then at 4 p.m. he spiked to 38.6 again. I wanted a punching bag. I was so frustrated! When I saw the attending on the way out today, he said lets see how Alex's counts are tomorrow and go from there. His ANC was up to 260 today. It will be interesting to see if it goes up or down tomorrow.
Alex's big brother stopped by today. Alex had a lot of fun with him :) Alex seemed to have more energy today. He spent a lot of time in the playroom building a bridge with popsicle sticks. Tomorrow he wants to paint it. It is hard to keep him busy when he is feeling good, but I'm glad he had more energy today. He still isn't eating much, so hopefully his appetite will pick up soon.
Thanks for checking in on us.
Jill
Sunday, August 11, 2002 at 9:51 PM (PDT)
Hi All-
Alex had a whopping ANC of 30 today. His mono's are 55, so hopefully counts will rise soon. He is still spiking a fever. They are running some more blood tests and are talking about a full body CT scan and antifungals if the fever persists. Alex seemed a little perkier this evening and was eating a little without my prompting him :) I hope this is a good sign. Cousin Julia stopped by before her shift in the ER tonight. Alex was hoping that cousin Dan would come play video games with him, but he had a scratchy throat :( Wish I had more to report, but it was a pretty uneventful day.
Jill
Saturday, August 10, 2002 at 9:37 PM (PDT)
Hi All-
Well, Alex had a reaction to the new antibiotic. He broke out in hives. They are now pre-medicating with benadryl and giving the antibiotic over 2 hours. He has been hooked up today for some IV fluids as well. He took a long nap from the benadryl this afternoon, but it didn't seem to phase him this evening. His temperature is still spiking up to 102. If the new antibiotic doesn't kick in, they may start antifungal meds tomorrow or Monday.
When Alex was awake today he had fun playing Mastermind for Kids and Othello. He conned me into taking him a new game for the game boy tomorrow, so I'm sure that will keep him busy :)
Jill
Saturday, August 10, 2002 at 8:23 AM (PDT)
Hi All-
The CT scan and the chest x-ray are negative. Since they can't find the source of the fever, they added a second antibiotic yesterday. If the fever doesn't break, they will also add an antiviral medication. As of last night, the plan was to NOT give the 4 days of IV chemo (Ara-C). They will start up with the leg shots next week. They hope that by not giving the Ara-C, counts will start to rise next week. We can't get out of jail until the fever breaks and counts are rising.
Steve and I were finally HLA typed on Thursday and preliminary results show that we are not a match. It looks like Alex got half of each of us, or a 3/6 match.
Alex played Nintendo most of the day yesterday. The hem/onc floor has quite a few game systems floating around the floor, and Alex hogged one yesterday. He is still not eating a lot, but he is drinking, so he isn't hooked up to IV fluids and can move around if he wants. One of his antibiotics smells really bad, and it makes his urine smell like cat pee. He started screaming yesterday, "why do I have to smell like a cat?" I just purred at him!
We were planning our escape yesterday when the nurse informed us that if we leave against Dr's orders, we would be responsible for the bill!!! It's not like we would really leave, but it was fun thinking about how we could sneak out without being noticed :)
Hope everyone has a good weekend.
Jill
Saturday, August 10, 2002 at 10:23 AM (CDT)
Hi All-
The CT scan and the chest x-ray are negative. Since they can't find the source of the fever, they added a second antibiotic yesterday. If the fever doesn't break, they will also add an antiviral medication. As of last night, the plan was to NOT give the 4 days of IV chemo (Ara-C). They will start up with the leg shots next week. They hope that by not giving the Ara-C, counts will start to rise next week. We can't get out of jail until the fever breaks and counts are rising.
Steve and I were finally HLA typed on Thursday and preliminary results show that we are not a match. It looks like Alex got half of each of us, or a 3/6 match.
Alex played Nintendo most of the day yesterday. The hem/onc floor has quite a few game systems floating around the floor, and Alex hogged one yesterday. He is still not eating a lot, but he is drinking, so he isn't hooked up to IV fluids and can move around if he wants. One of his antibiotics smells really bad, and it makes his urine smell like cat pee. He started screaming yesterday, "why do I have to smell like a cat?" I just purred at him!
We were planning our escape yesterday when the nurse informed us that if we leave against Dr's orders, we would be responsible for the bill!!! It's not like we would really leave, but it was fun thinking about how we could sneak out without being noticed :)
Hope everyone has a good weekend.
Jill
Friday, August 09, 2002 at 07:29 AM (PDT)
Hi All-
Quick update. Yesterday we changed rooms in the morning. They like to play musical beds, but we got a better room with a window and a couch bed. Apparently people were fighting for this room, but the nurse informed me that we got it since we are going to be there "indefinitely". Hmm... that doesn't sound promising. They are still holding chemo and they ordered a CT scan of Alex's sinuses to rule out sinus infection and a chest x-ray to rule out pneumonia. When I was leaving at 9 p.m. last night, they were finally going to take Alex down to radiology. Apparently with no white blood cells, you can have an infection and no symptoms. Alex had 440 white blood cells yesterday. The normal range is 5,000 to 13,000! On chemo you don't expect to see these levels, but you do expect it to be above 1,000. Alex is still spiking fevers of 102-103. His fever stays around 100.5 with tylenol.
That's it for now, I'll try to get back on the computer later tonight or early tomorrow.
Jill
Wednesday, August 07, 2002 at 9:36 PM (PDT)
Hi All-
We had a pretty uneventful day. Alex's fever is still spiking around 102. Tylenol takes it down to about 100.2 His ANC is down to 330. His hemoglobin is up after his transfusion which took place between 12 and 3 a.m. They held all chemo today.
Alex had fun playing with his new Yu-gi-oh game boy game. It kept him entertained for hours :) One of the catchers from the Los Angeles Dodgers was visiting the hospital today along with about 5 camera crews. I was unhappy that he only saw some of the kids on the hem-onc floor due to time constraints. Alex was bummed that he didn't get to meet him, and thought they should kick him out of the hospital. Alex got a Dodgers hat as a consolation prize. I am glad that celebrities want to contribute to the hospital and visit the kids, but they should visit *all* the kids on the floor. In the past, the soccer team visited, and they saw all of the kids. We also had a visit from our friend Vera. She is a really sweet black lab. She performed some tricks for Alex. The respiration therapist wasn't happy about Vera's performance since he was waiting for us to give Alex his Pentamadine (to prevent pneumonia). We kept telling him to come back later since Alex thought he was going to see "a real" baseball player.
Well, we're still hoping that the antibiotic kicks in and Alex's fever is down tomorrow. He needs to be fever free for 24 hours to go home.
I'll try to update again tomorrow night, but I might not be able to get to a computer.
Jill
Tuesday,August 06, 2002 at 10:50 PM (PDT)
Hi Everyone-
Alex is in the hospital, but he is doing o.k. They got him started on antibiotics, and they hope his fever goes down. If it doesn't, they will start running some tests to try to determine the cause of the fever. For those of you in the know, ANC is 440. He needed a blood transfusion tonight. His hemoglobin was 6.4!!! They transfuse at 8.0 It was 8.8 in the ER last night. I was really surprised it fell so fast. I also couldn't believe that he was running around in the hallway (with his mask on!!!) when they came by to tell us that he needed a transfusion. The earliest we can get out of jail, I mean the hospital :) is Friday if his ANC is rising and his fever is gone.
I'll update again when I can.
Jill
Wednesday, August 07, 2002 at 10:50 PM (PDT)
Hi Everyone-
Alex is in the hospital, but he is doing o.k. They got him started on antibiotics, and they hope his fever goes down. If it doesn't, they will start running some tests to try to determine the cause of the fever. For those of you in the know, ANC is 440. He needed a blood transfusion tonight. His hemoglobin was 6.4!!! They transfuse at 8.0 It was 8.8 in the ER last night. I was really surprised it fell so fast. I also couldn't believe that he was running around in the hallway (with his mask on!!!) when they came by to tell us that he needed a transfusion. The earliest we can get out of jail, I mean the hospital :) is Friday if his ANC is rising and his fever is gone.
I'll update again when I can.
Jill
Sunday, August 04, 2002 at 05:53 PM (PDT)
Hi All-
It has been a long week. On Tuesday Alex went in for his LP and IV chemo. Unfortunately they saw 5 leukemia cells in his Spinal Fluid. They had seen 17 cells on the previous LP, but weren't sure if they were leukemia. The good news is that there were less cells, the bad news is that Alex may need a bone marrow transplant. Emily is not a match. For now, Alex is continuing on his protocol. He will have another LP in 4 weeks, and we will go from there. If they see any leukemia cells, he may need a bone marrow transplant as soon as he is in remission again. If they don't see any leukemia cells, he may be allowed to start maintenance and have LP's every four weeks to check for leukemia cells. Alex has also had a fever since Tuesday, but is doing well, and says he fells pretty good. So far we have been able to stay out of the hospital. We went back Friday for counts, and they were good, so we are able to stay home as long as Alex's temperature stays under 102.
On Tuesday, we shared a room with Alex's friend Hannah and her sister Abby. The kids all had a great time, but were really loud! (sorry Susi) Apparently Emily was turned into "power dog". She now goes around panting :) She also misses Hannah's dog "peaches", also known as Abby. Emily had such a good time that she thinks she should always be able to go to clinic with us.
Thursday was a really bad day here. The garbage disposal backed up into the kid's tub. While I was in the shower, Emily spilled apple juice all over the kitchen. The ants that we had finally gotten rid of came back. Alex spiked a 101.4 fever, and when we had dinner ready to go in the oven, it wouldn't turn on. A few people have told me that I needed a distraction, but I would have liked a distraction that didn't cost me $625!!!
Today Aunt Marilyn, and cousins Dan and Julia came over and we celebrated Steve's b-day. Alex said the cake tasted like wood and didn't eat it, so Emily ate his piece too :)
Hopefully this will be a quiet week. Alex goes in on Tuesday to get a blood count and antibiotics to prevent pneumonia. He gets this breathing treatment once a month. I will give the IV chemo at home on Wednesday through Saturday. And, I can now pull out Alex's port needle to de-access him. I was so excited and it was so easy. Alex decided that "nurse mom" is o.k. He was really worried that I wouldn't be able to pull the needle out.
Hope everyone has a good week. As always, thanks for keeping us in your thoughts and prayers.
Jill
Wednesday, July 24, 2002 at 06:12 PM (PDT)
Hi All-
Sorry it has taken me so long to update. I was waiting for Steve to put some new pictures up that I took at the clinic last week. Alex says that there are many more nurses he wants pictures with. They are all his *favorites*. I think I'll have to do a group picture :) So, don't forget to check out the new pictures! (There are 4 of them on the bottom of the page)
Alex has tolerated the chemo pretty well in the last few weeks. He is a little more tired than normal and he has had some back and knee pain. The other night he was begging for Tylenol w/codeine at 3:30 a.m. I told Steve to give him 1 1/2 tsp. and in the morning Steve told me that he had given him 1 1/2 Tbsp. When I called the clinic to tell them that I was concerned Steve had given Alex an overdose, the nurses first question was, "Is he still breathing?" As it turns out, Steve got the measurements confused, and he had given Alex the correct amount of medicine. Maybe I should be the one giving liquid med's from now on...
Alex took his last dose of steroids yesterday. He was so excited that he didn't have to take a pill to get his dinner. We had been bribing Alex with food to get him to take his pills. All he wants to do is eat, eat, eat when he is on steroids, so it was a great motivator!
Steroids can also cause moody behavior. Last week for dinner, Alex ate 3 blintz, a bowl of cereal, a large baked potato, a good helping of string beans, a roll, 2 huge slices of watermelon, another bowl of cereal, and he was still hungry! He asked for the remaining baked potato and I told him he needed to rest a while. He got so angry that he took the baked potato, crawled under the dining room table, and wouldn't come out! Alex held his potato hostage for about 15 minutes. All of a sudden, I see the potato flying out from under the table. Alex emerged a few minutes later. I felt so bad for him, but it was hard not to laugh! He never did eat the potato. He decided that ice cream sounded better. I gave in...
Last weekend, the kids had fun playing in the pool at Nana's. Steve thought the water was nice and decided to swim some laps. Alex said, "daddy's not swimming, he's splashing". No comment! Steve and I also celebrated our 12th Anniversary last Sunday. Time sure flies :)
Alex's counts looked good this week. There is still a chance they will crash now that he is off steroids, but hopefully they will be high enough next Tuesday to continue treatment.
Hope everyone is continuing to enjoy their summer.
Jill
Thursday, July 04, 2002 at 03:43 PM (CDT)
Hi Everyone-
I hope you are all enjoying your 4th of July festivities. We’re not doing a lot today since Alex started his second delayed intensification yesterday and is feeling pretty tired.
Alex decided he wanted the oncologist to do the LP (lumbar puncture also known as a spinal tap) without anesthesia so that he could eat breakfast. Normally the physician assistants do the LP's, but Alex's oncologist said that he would do it for him. It worked out great. Alex was more relaxed and with the EMLA (numbing cream) and Lidocaine, he didn't feel anything. They made it relaxing for Alex by playing a tape he brought in and the child life specialist distracted him with an Eye Spy book. The oncologist was really patient with Alex and told Alex to tell him to stop if anything hurt. To be in control of the situation, Alex did this quite a few times! Alex also had two IV chemo drugs and he started taking steroids. He has to take the steroids for 7 days. Alex usually becomes an eating machine on steroids and all he talks about is food. I need to get to the grocery store to stock up!
While Alex was sleeping and getting his chemo, cousin Julia stopped by to say Hi. Alex was really bummed that he didn’t get to see her, but since she just started her residency at Children’s, I’m sure we will see her soon.
Alex goes into the hospital on Saturday for a shot and then he goes in on Monday, Wednesday, and Friday next week.
Steve’s mom is coming down on Sunday to help out for the next few weeks. Alex and Emily are excited about getting to see grandma.
Hope everyone continues to enjoy summer. I’ll update again when I can.
Jill
Sunday, June 23, 2002 at 11:04 PM (CDT)
Alex had his IV chemo on Thursday and his 2 leg shots on Friday. He was running a fever this weekend from the chemo but thankfully we didn't have to go to the hospital. I told everyone it was a "fever watch" weekend. Alex is now off chemo until July 3rd when he starts the second Delayed Intensification phase of his treatment. This is 8 weeks of really nasty stuff. Alex made it through the first Delayed Intensification with only one three day hospital stay, so we are hoping that it is just a lot of visits to the clinic with no admissions.
This week Alex got to meet his 1st grade teacher and the principal at his Elementary School. Alex is excited about being able to go to school next year after missing this school year. The principal told Alex that they have really great kids at the school and Alex is telling everyone all about it!
Alex is also excited about meeting his "big brother" from Chai Lifeline tomorrow. His new friend will come and visit once a week during the summer. It's not going to be an easy summer with all the chemo, and I think it will help Alex to have a special friend.
That's it for now. I'll update after the 3rd. I hope everyone has a great 4th of July.
Wednesday, June 12, 2002 at 09:44 PM (CDT)
Hi Everyone-
Alex's blood counts were high enough to get his IV chemo on Monday. He got his two leg shots on Tuesday. The leg shots make him run a fever and he also feels nauseous. I was really proud of Alex when he got his shots. He didn't flinch or make a sound. He just watched the nurses poke him. He has come a long way since diagnosis.
Alex has been running a fever today and has had some throat pain. We think the fever is from the shots so the oncologist said we could see how he feels tomorrow. If he has a fever in the morning he will have to go into the clinic for a blood test. I hope the chemo is out of his system by tomorrow and his temperature is normal!
Alex hopes he feels better since he has play dates on Thursday and Friday with friends that also have leukemia. He misses his old friends from preschool and hopes he can see some of them soon :)
Thanks for stopping by to visit, and don't forget to sign Alex's guest book!
Saturday, June 01, 2002 at 11:57 AM (CDT)
Hi everyone-
Alex had his IV chemo on Thursday and his two leg shots on Friday. They gave him 3 drugs to pre-medicate him on Thursday so he wouldn't be nauseated. The drugs totally knocked him out and he slept all day and night! At least he didn't vomit :) Things seemed to be going well on Friday, but right before we left the clinic Alex vomited. We went home, and he spiked a fever of 101.2. We thought that we were going to have to turn around and go back to the hospital, but they told us to give him some Tylenol and keep an eye on him. He feels better and is fine today. He now has a week off again and is very happy about that. After two long days in the clinic, I'm happy too!
Hope everyone has a great week :) Please remember to sign Alex's guest book when you stop by. He keeps asking me to read the entries, and there aren't any new ones :(
Jill
Friday, May 24, 2002 at 04:15 PM (CDT)
This has been one crazy week. Alex had IV chemo on Monday and 2 leg shots on Tuesday. He had a reaction to the shots- chills, fever, vomiting. We were at the clinic for 8 hours while they decided what to do. We were finally able to leave after Alex got some IV antibiotics. I had taken Emily with me since I figured it would be a short day. She was a terror and had a major meltdown at 4:30 before falling asleep on me. Emily's 3rd birthday was on Monday. Forget the terrible 2's, and enter the terrible 3's! She is a very strong willed child.
Alex feels pretty good now, and can't wait for a sleepover at Nana's this weekend. He is also happy that he doesn't have to go back to the clinic until next Thursday. Yesterday he was running around the house saying "one week off, one week off". It always amazes me that Alex bounces back so fast. I think I'm still recovering from Tuesday! I'll try to update again next weekend.
Thursday, May 09, 2002 at 11:32 PM (CDT)
Alex started a phase of chemotherapy yesterday called Interim Maintenance. I can't figure out why it is called that since it is still quite a bit of chemo. We go in every 10 days for 2 days at a time for 8 weeks. Yesterday Alex had a spinal tap, and IV chemo. Today he had 2 leg shots. He is such a trooper. He is doing o.k., but is a little tired.
We had to postpone Alex's trip to Sea World for now. Hopefully we can go sometime in the Fall. Alex really wanted to see the new baby Shamu that was born last week. Even though Alex knew that he might not get to go on his trip this week, he was a little disapointed. Can't say that I blame him, I would have loved a vacation too!
Hopefully the next 8 weeks will be uneventful and Alex will stay out of the hospital.
Monday, April 29, 2002 at 11:13 PM (CDT)
Alex went to the clinic today for a cbc and his counts are low. Since his ANC is 330, we decided to postpone his Make-A-Wish trip to Sea World. He is scheduled to start his next phase of chemo next week if his ANC rises to 750. Alex is excited to be able to stay home for a week with no chemo after the last two weeks of going to the clinic every other day. He says that this week is going to be great!
Saturday, April 27, 2002 at 03:46 PM (CDT)
Alex finished his first DI (delayed intensification) phase of treatment yesterday with a shot and a blood transfusion. He is feeling better today. His counts were low again, so he won't start the next IM (interim maintenance) on Monday. If his counts start to recover, we might be able to squeeze in Alex's Make-A-Wish trip to Sea World in San Diego. Alex wants to train Shamu, Dolly the Dolphin and the Sea Lions. This has been something that he has wanted to do since he was Emily's age. If we can't go now, we will go sometime in the Fall when Alex starts the maintenance phase of his chemo. He will then continue with maintenance chemo until December 2004.
Monday, April 22, 2002 at 11:14 PM (CDT)
Alex went to the clinic today for one of his three appointments this week. His hemoglobin is 8.2 and they transfuse at 8.0 Normal range is 11.5-15.0 So, we are looking at a RBC (red blood cell) transfusion later in the week. He is pretty tired and pale, but some RBC's should perk him up. The last time he had a transfusion it looked like he was wearing lipstick, his lips got sooo red. His ANC is 440, and under 500 we stay home and keep visitors to a minimum. Actually, I think we always stay home and keep visitors to a minimum :) For those of you who don't know what an ANC is, I'll provide a tutorial at a later date. Alex calls his ANC a count of his fighter white blood cells, and basically with a count this low, he doesn't have any white blood cells to fight off infections.
Alex loves all the guestbook entries. He has been asking me to check for more all day :) Thanks for visiting.
Jill
Wednesday, April 17, 2002 at 01:04 AM (CDT)
Well, I've finally decided to create a web page for Alex!
It's been almost 8 months since Alex was diagnosed with high risk t-cell ALL. Alex went into remisson on day 28 of his treatment thus classifying him as a slow early responder. He is getting the longest and strongest chemotherapy treatment available plus 2 weeks of cranial radiation. He has had a lot of reactions to the many drugs he has been asked to take from nausea and vomiting to hives and fevers.
We have been leading a pretty isolated life in order to try to keep Alex out of the hospital. So far since his initial 10 day stay at diagnosis, he has been admitted 5 times. Each admission has been hard on him and the whole family. Emily gets really upset when her big brother isn't around to bother, I mean play with her.
Alex has been getting home schooling through our school district and is keeping up with his Kindergarden class. He wishes that he could play with his friends more.
Alex has been into games lately, especially card games. If you know of any he might like, please visit his guest book and let him know.
Wednesday, April 17, 2002 at 12:40 AM (CDT)
This page has just been created. Please check back for additional updates.
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