Journal History
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Friday, May 6, 2005 7:06 AM CDT
Tests were all good. Right now we test every three months. Bone marrow, CT and MIBG scans, blood and urine tests. We share info with the kidney doctor as well to keep an eye on them. Andrew has started baseball. Brooklyn Center Red Sox this year. Tom
Thursday, April 7, 2005 1:01 PM CDT
Short update. Everything is going well. Tests again the end of April. tk
Monday, November 1, 2004 2:02 PM CST
Friday - Left RMDH with little time to spare.
Got up this AM and we started to pack up. Seven pieces of luggage! When Ang travels for the two weeks she has all the medical stuff in one suitcase, all the linens for the beds in another along with all the other stuff to live at RMDH for the two weeks. Once most the packing was under control and loads of laundry were going Ang and Andrew headed for the clinic to check his BP and more importantly, take part in the Halloween celebration on the 9th floor. Everyone had a costume and if you didn’t have one they had plenty to choose from. They had pizza, candy, a magician and lots of fun for the kids…everything happens in spite of therapy for the day. As I mentioned the doctors decided to end the treatments for Andrew. We only had one last week anyway. This gave him a chance to come to the clinic without all meds, pain, etc. He sure took advantage of the day. He and his buddy Jake from Valdosta, GA, hung out until Jake had to go to therapy. His other buddy Canon did not feel well last night but seemed better today. Andrew’s appetite has kicked in again and he feels well enough to put on his karate costume and take part in all the festivities. At the end of the day he told mom, “I had a good day.”
I joined them after cleaning our room…have to leave it in as good or better shape as you found it. Do unto others…
At the clinic it was one goodbye after another. Somewhat sad for Andrew but mostly for mom. Nurses, doctors, and other cancer moms. She has met so many good and courageous people on this journey. In some ways it’s sad to think of the people they will miss. Who would have thought that 22 months ago we would continue to cross paths with people we met the first few days. New faces did appear and some left along the way. We will correspond and keep up with other’s Caringbridge sites. They check ours so we wish them the best and keep them in our prayers.
I called the cab to pick us up at RMDH at 3:30 for a 5:30 pm flight out of JFK. Slight miss judgment on my part. JFK is a little further away than LaGuardia and Friday afternoon traffic out of Manhattan was bad. BP on mom and dad was high enough to check us into the in-patient floor. Oh well, I am writing this somewhere over Wisconsin so we made it with a few minutes to spare. Mom and Andrew are passing the time by catching up on his homework. A few chapters of Shiloh and now math. Looking forward to seeing Nick, Emily and Molly. Once we land we will call ahead to have the kids take Molly outside before we arrive home. She tends to piddle with all the excitement of our return. Come to think of it, now that 12 trips to NYC for therapy are done we may all piddle with excitement. Thanks to Ang’s parents and the Wieses’ for taking care of the family while we were gone.
Tom
Thursday, October 28, 2004 8:22 AM CDT
The good news is that the BP seems to have finally come down and last night Andrew started to eat again. This time it was eight days. He has done this in the past but in Minneapolis they would get him on IV nutrients much earlier. We did start nutrients on Tuesday night and then the lipids (fat) on Wednesday night. He started with some ice cream sandwich (just like the ones at the hockey concession stand) and moved on to some chicken pot pie (only the chicken chunks). He got up and around the floor (one night stay has turned into three in the hospital) and even played PS2 and Monopoly. He beat his mom and dad at Monopoly.
I will say this for the hospital; we have seen a lot of doctors. I mean a lot. Drs. Chung, Kushner, a nephrologist, day resident, night resident, nutritionist. And they usually are accompanied by a TEAM of doctors and residents! We see them all each day. Andrew’s and his BP has become somewhat of a celebrity and a curious anomaly.
Yesterday they did a renal scan and today he will have an ultra sound. Both tests are looking at his kidneys which are the most common source of high BP in children. In Andrew’s case the most likely source is the 3F8 antibodies. We will have to continue to monitor the BP after we get home. We have never done that at home before so we will pick up a home BP kit. Most likely need a large cuff for dad as well.
The current plan (the plan changes every 4 hours) is that we may be discharged today and sleep at RMDH tonight. Come to the clinic tomorrow to check BP and catch a flight tomorrow (Friday) afternoon. The clinic where we have been going for the last 20 months is having a Halloween party tomorrow and Andrew would like to go. He brought a costume in anticipation of something like this. That would be a nice end to this trip if things go according to current plan. Tom
Tuesday, October 26, 2004 11:46 AM CDT
This has been our best trip and this has been our worst trip. - Andrew
Tuesday Morning.
Andrew is in the hospital. The first week of antibodies put his blood pressure so high that this Monday they suspended treatment. That’s it. No more antibodies. We were told to go home…then they checked us into the hospital here in NYC. After conferring with the other members of the medical team they did not want Andrew to leave with such a prolonged high blood pressure. Medication for the high blood pressure was not working as it should. Dr. Kushner decided that he could not risk sending us back to RMDH. He wanted closer observation, IV fluids (Andrew has not eaten for a week now) and more meds for the high BP. Ang is sleeping at the hospital with Andrew. He is completely wiped out and has dropped over 10% of his body weight. One minute we thought we were going home and the next we were being moved to the hospital wing.
I arrived on Wed. night with Emily and Nick. They had the long weekend off from school for MEA. When we arrived it seemed to perk up Andrew. By the third day of treatment I could see this round was different. On Thursday I took the older kids for a break from the clinic to Rockefeller Plaza where it is renamed “Democracy Plaza” during the weeks leading up to the election. They have many things about the Presidency and past elections. On Friday I stayed with Andrew at the clinic while Ang took them on the UN tour and Ellis Island. She said that was the most interesting place (UN) that she had been in all the trips to NY. Emily and Nick’s social studies teachers would be proud of the experiences on this trip.
Over the weekend the doctors wanted us to check Andrew’s BP at urgent care to see if it was coming down. It didn’t. We spent three hours each day of the weekend trying medications and under observation. Nothing worked for very long. Right now the doctors are very concerned about the damage that the high BP can cause. They are trying another medication today and have talked about bringing in a kidney specialist. We did see a nephrologists (sp?) over a year ago in Minneapolis and he said everything was fine. We are praying that today is the day it comes down.
Tuesday Afternoon
The doctors want to send us home to Minneapolis but they are going to keep him one more night at the hospital on meds and IV fluids. Ang has been lobbying them for IV nutrients but that seems to be a no no around here. He has not eaten in a week so they seem to be relenting and maybe tonight the nutrients will start. There are several flights out of NYC but we have to coordinate his meds, taxi, flight schedule and med pick up at home. Additionally, we have to get to the clinic first thing the next morning to see our oncologist and check BP. Andrew says this is our best trip (he gets to stop the antibodies and go home early) and our worst trip (he feels lousy). Tom
Wednesday, October 20, 2004 6:32 AM CDT
Our little friend Canon started his first round of antibodies yesterday – the same week we begin our last round. It’s been 21 months since our first round. We met Sydney last night at dinner. She is 9 and is also starting her first round of antibodies. Jake is here. He’s 10 and on his 4th round.
Monday was tough on everyone! There was quite a bit of narcotics dispensed on the 9th floor of the hospital, and many tears that continued at the Ronald McDonald House in the evening! Andrew even has a rough time our first day back – but with 11 rounds behind us – it’s much easier than the kids doing the earlier rounds.
I’m not sad about being here this time – I almost feel festive. Tom, Nick and Emily will join us on Wednesday. Maybe we’ll have to take treats in to share with the nurses. Emily made the comment that it wasn’t quite as exciting as her friend going to Cancun for the MEA break, but hopefully the kids have some fun! Last year this was the week we took Andrew’s “Make-A-Wish” trip to Disney.
Dr. K says we will still need to test every three months for another year, but we should be able to test in Minnesota. He said on Monday, “After this round, you’re treatment is over.” WOW, that really sounded good! I feel like we’re about to close a chapter in our life. So, of course, I started feeling a bit philosophical. But I read it this morning – “Unpleasant circumstances often have a way of being the best part of God’s most magnificent design. God’s sovereign timetable is working in the life of (our) family.” I hope that our family and yours have learned from the experience we have shared.
Today was a little less pain than yesterday. We used 2 ½ doses of pain meds instead of 3, but my small boy has been sleeping for most of the afternoon. He woke up with a headache and has thrown up a few times. I’m hoping it’s just a bad afternoon and that tomorrow and the rest of the week goes better.
I may be in New York – but I’m cheering for the “other” team – so GO RED SOX!
Thursday, October 7, 2004 2:49 PM CDT
Tests were all negative! We were even able to skip one of the tests because the "bubble" that they had been seeing on the CT scans in the past had gone away. They thought that Andrew might have had damage from all the vomiting in the area of his esophagus near his stomach. The test that they wanted to run was a barium swallow with a scan. Doesn't sound like a fun one so mom and Andrew were pleased to skip it.
Schoolis in full swing. Nick is heavy into marching band and Emily is preparing for hockey and dance. Andrew is also ready for hockey. Next(and last) trip to NYC is the end of this month. Planned over the MEA weekend so that the kids won't miss school. The whole family is going this time. Last fling in NY but more importantly Ang and I meet with doctors to discuss "What Now?" The antibodies that Andrew was trying so hard to develop have never materialized but we can't say it has been a waste of time. We do know that the first treatment cleaned out the bone marrow and who knows maybe all the other treatments have beaten this thing down. Some kids have developed antibodies this late in the treatment so we can hope that the 12th trip is the charm.
I think it has been 12. Wow. Or is it Whew? So many trips for Andrew and his mom... 150 nights at the Ronald McDonald House, 300 walks to and from the clinic, 720 hours at the clinic, 120 injections, nearly 350 pain killers, 24 plane flights (two nights sleeping in the airport), LaGuardia, JFK, MSP, Newark, Memphis, Detroit,Cleveland, two snow storms, one Broadway play, one off Broadway, Cirque du Soleil, Carnegie Hall, two Rangers games, one GOPHER NIT game, Yankee Stadium, Shea Stadium, Madison Square Garden, Ellis Island, Ground Zero, Intrepid museum, Art Museum, Monet's Water Lilies, Natural History Museum, South Street Seaport, Pottery Shop, Central Park Zoo, Bronx Zoo, Macy's Thanksgiving Parade, Saks, Rockefeller Square, the Christmas tree at Rockefeller Center, St. Patrick's Cathedral, Times Square, Toys R Us, Toys R Us, Toys R Us, Pokemon Store, Central Park, Food Emporium, Gristedes, favorite deli, "Dirty Water Hot Dogs", Starbuck's, Mickey Mantle's, Petaluma's, Blue Moon, Bubba Gump's, Mars 2112, Patsy's Pizzeria, Chevy's, Street fairs, China Town, fake "Rolex" watches, Statue of Liberty, Staten Island Ferry, Wall Street, daytime harbor cruise, nighttime harbor cruise, Circle Line Bus Tour, Empire State Building by night, ESB by day, Brooklyn Bridge, Varrizanno Bridge, Battery Park, 5th Avenue, The Village, Dr. Kushner, Nurse Michelle, Nurse Cat, Nurse Edith, Mayor Bloomberg, Jason Mraz, The Donald, people from all over the world, hearing many languages, pigeons, Dog walkers, Tom Brokaw's Chair, RMDH Volunteers, Bingo Games, Subways, taxis, buses, water taxies, van, flight simulator, remote control sailboats in Central Park, Police Bus, the Plaza Hotel, Carriage ride, Grand Central Station...
Tom
Tuesday, September 21, 2004 9:19 AM CDT
Test Week
This morning is the bone marrow and CT scan. He is resting now after the marrow. Missing some school this week and all we hear about is that the cray fish are in and Mr. Johnson says "we can take one home with our parents permission". Mom and I are united on this one.
Tomorrow he has the MIBG scan for the first of two days. They also want to do a “barium swallow” to check for damage to the area near his throat and stomach. He has had so much vomiting over the past 2-1/2 years that they feel there may be some damage. This check will be used as a base line for future tests. He is in good spirits and while test week is never easy it seems to be more routine than in the past. Tom
Tuesday, September 7, 2004 9:09 PM CDT
First day of school. Andrew is doing well. He has the same 4th Grade teacher that Emily had...Mr. Johnson. We are very happy.
Emily is a 7th Grader and Nick moved up the high school.
Tests later this month: CT scan, MIBG scan and Bone Marrow biopsy. Looks like one or two more trips to NYC unless he gets a HAMA this round. Thursday Ang will send the blood samples to MSKCC in NY. That test tells us if we have a HAMA or not. Tom
Wednesday, August 25, 2004 5:55 AM CDT
Tuesday afternoon – and we’re coming along! No “surprises” since Friday afternoon and the blood pressure is still good! Our little friend Canon (whom we met last time) is in surgery to remove his tumor as I write this. Please include him and his parents in your prayers tonight.
My dad arrived before lunch on Saturday and we headed off to China Town. I, of course, found things I really didn’t need to buy – but did anyway. Sunday we went to the Yankees game with a group from the RMH! What a perfect day for outdoor baseball – sunny and 70’s! I was glad I could take my dad to Yankee Stadium.
Our Monday treatment went well. I think it pushed Andrew along knowing that I had promised Toys-R-Us in the evening! I was the mean mom and made him walk a while before we caught a cab. (I noticed a small boy snoozing in the cab before we got to Times Square…) We then had dinner at “Bubba Gumps” which is just across from Toys-R-Us. It was Grandpa’s birthday last week – so we said this was his birthday supper. The shrimp was good! (Andrew said the Chicken fingers were good!)
I’ve been trying to encourage Andrew to take less pain meds. We’ve started taking only half doses so that maybe we’ll take less. Yesterday and today we had a total of 2 doses each day. Even with only 2 doses he can get very feisty, or a bit weepy or angry – all within 15 minutes!! (I have decided the only thing that could be worse than a child on dilaudid would be to have a child and his mother on dilaudid at the same time!) We still think the problems we have when we get back are due to withdrawal symptoms. We’re planning a week’s worth of tapering his drug this time – maybe that will help…?!
Thought for today from the Lutheran Digest:
The Will of God will never take you to where the Grace of God will not protect you.
Ang
Sunday, August 22, 2004 11:41 AM CDT
Wed. August 18, 2004
We’re back in NYC for Round #11. We found out this past Saturday about noon that we for sure had a place at the Ronald McDonald House. I did my best to not worry about the possibility that we couldn’t stay here – I try not to worry about things that are out of my control.
We have three days behind us already! Monday was a typical first day of therapy – everything got going very slowly and the day was very long. A full three doses of pain killer, (such nasty stuff – I know what it does to him!) but no extra problems. Andrew didn’t sleep much at the clinic, but slept from about 5-8 in the evening. Getting him to go to bed wasn’t easy.
Tuesday he only used 2 ½ doses of the pain killer. Knowing how tough the withdrawal is when we get home, I’m trying to encourage him to get through the pain (which is short term) without as much medicine. It’s strange because I used to feel like I just wanted him to have as much as he needed at the time of the pain. When we were back at RMH in the afternoon, Andrew did have pain in the bottom of his feet. He used to get that when we first started treatment. We put some warm packs on, and they felt better. So about 5:30 we went out for our scooter/walk (yes – even though it tries my patience I decided it was good exercise for both of us!)
And today Andrew used only 1 ½ doses of diluadid!! It always helps when the clowns come just before the pain starts – they keep his attention focused on something other than his body. And I’m not sure if the clowns entertain Andrew, or Andrew entertains the clowns. Today the one clown showed Andrew how to play her Ukelele (sp?) and sing “Row, row, row your boat…” Andrew added the line “push your sister overboard and listen to her scream…” Oh, they liked that and decided they’d have to use it in the future!
So the week is moving along quickly. Andrew is doing great and my dad will be here on Saturday. I’d rather be at home, but things are going very smoothly here in NY. I just try to remember to “…run with perseverance the race that is set before (me).” Hebrews 12:1
Ang
Friday August 20, 2004
It’s Friday afternoon and Andrew is taking a nap – at Mom’s suggestion. Our week has been great. No complications – not even increased blood pressure! His appetite has been pretty good as well.
Thursday night the ladies of Temple Emmanuel brought dinner to RMH. They always bring homemade things and Andrew and I both enjoyed our supper – especially the chocolate cake! (Although the wine was nice too!)
We ended the week spending some time playing with Jake. He is from Georgia and is 10. Our schedules should match up again in October, which will give the boys a little something to look forward to. They only caused a bit of havoc at the clinic – tossing a small football back and forth in the hallway before they were hooked up to their IV machines and sent to their beds!
As I was writing this, I had a bit of a surprise. Andrew woke up from his nap and ran to the bathroom – thank goodness he made it. His tummy didn’t want what was in there. I hope it was a quick one-time thing and not the start of something we don’t want…considering within 20 minutes of the “episode” he finished off the box of Cheeze-Its and is now asking for a peanut butter sandwich, I’m guessing it was just a “blip” in our week. I just know – we will get through whatever we have to. “(We) can do everything through him who gives (us) strength.” Philippians 4:13
Keep on Praying!
Ang
Tuesday, August 10, 2004 10:37 PM CDT
Last update was over a month ago. The summer has been flying by for the Karp’s. Ang’s last update they were in NYC for another round of Anti-body treatment in June. Things were going well. Unfortunately, like the last few rounds Andrew had a post treatment reaction. He was O.K. for two days when he came home from NYC but then he started the nausea and didn’t eat for eight days.
Ang and Dr. Bostrom tried to wean Andrew from his dilaudid (pain killer) after all the doses he had in NYC but that did not seem to cut the nausea. After a few nights of IV nutrients and rest he did start to turn around and is again participating in soccer and golf. He is very resilient.
No HAMA yet for Andrew. Dr. Kushner let us know a couple of weeks after the last trip. Ang and Andrew leave on Sunday Aug. 15 for two more weeks. That is disappointing because we seem to have the old normal life back again when he is feeling better between trips. I hate to see them go.
This trip they are wait listed for the Ronald McDonald House. Not good. We should know more this weekend where they can stay.
SUMMER UPDATE
July brought two family vacations. We rented an RV and headed for Michigan’s U.P. The furthest destination was Copper Harbor, MI. We followed the Wisconsin shoreline along Lake Superior with stops in Duluth, Bayfield, WI, Porcupine Mountains State Park, MI, McClain State Park, MI and finally Copper Harbor. Beautiful scenery, fun hikes in the state parks. On the way back we stayed at Copper Falls State Park, WI and Amicon State Park, WI.
The second trip was a Christmas present from Ang’s folks to all their kids and grandchildren. We spent four days in Lutsen MN. Had a terrific time. Campfires by the beach. (New) Moonrise over Lake Superior. Alpine Slide. Gondola ride. Golfed Superior National with Nick (most beautiful course I have ever played), day trip to Grand Marais, Rock skipping, “Sven and Oles Pizzaria”, Gift shops, and fished Lake Superior on a chartered boat with Jerry, Nick, Phil and Uncle Bob.
Andrew did not attend the charter. Good thing, the fish may have pulled him in…no fish story here. Go to www.toftecharters.com and click on photos. Nick pulled in the big one. 16 lbs. and 36 inches long. Everybody caught fish and had a great time.
When at home the kids have been involved in several activities. Marcia, our Summer nanny, has been shuttling them to activities, helping with reading and math, reminding them of chores, participating in fun activities and generally keeping the three kids on the straight and narrow. The kids have really enjoyed having her around and she has done an excellent job.
That should just about do it for our summer as things wind down. Nick is now in high school and has started marching band at Champlin Park High – percussion. They will march at the Minnesota State Fair the end of the month. Emily will be a 7th grader and Andrew will be in 4th. Looking ahead Ang has already purchased all the school clothes. I think she told me I’m in charge of getting school supplies while she is in NYC. I better check on that to confirm. Tom
Friday, June 25, 2004 12:54 AM CDT
Friday afternoon. We’re done. Twenty-four hours from now we’ll be on a plane home. We decided to wait and travel on Saturday to see if Andrew’s stomach does better.
Our week has gone very well! We’ve had a bit less pain (Thursday he only used 1 ½ doses of pain medicine!) We got through both weeks with no nausea or vomiting and the blood pressure – even today – is great! He’s been eating, even if it isn’t always the healthiest.
Every day this week we’ve been out walking in Central Park for 1-2 hours. Wednesday we stopped and rented a remote control sailboat (just like in the “Stuart Little” movie!). He was surprised to find out it didn’t have a motor – he had to learn to move the sail and the rudder to make it go and steer it! I really believe all the “scootering” exercise has helped keep Andrew’s strength up and help work the medicine through his system. But I told Tom we’re exercising Andrew’s legs – and my patience! A 9-year-old, on a scooter, near a lot of people, with a bit of pain medicine in his system and a lot of energy is very nerve wracking!! (My dad deserves a medal for putting up with the two of us this week!!)
We’ve met more families this week. Jake is 10 and here from Georgia. He was diagnosed when he was 7. He had more than 23 tumors, but with chemo and radiation seemed to get rid of the cancer – for 15 months he was clean. His dad said they wanted antibodies but couldn’t get into the program. Now the neuroblastoma is back, and this time they were accepted here at Sloan. Jake has a twin brother Luke, who is by his side for all of this. Jake will start his antibodies the first week of July. Canon had to have his surgery delayed because he didn’t have enough platelets. We’ve been able to visit with friends we made last time – Rachel’s family (I introduced them to Canon’s family since both families are from Kansas.) It’s good to see familiar faces and to share stories. When I talk to these families, there is an amazing amount of faith and positive attitudes. One of the moms said it best, “We’re here for a reason.” It may be that each of our journeys and each of these children are the “people through whom God moves to announce and embody the hope of Christ to others.” (From my devotion book this week, entitled “Pointing to hope”).
We’ll be home soon!!
Ang
Tuesday, June 22, 2004 4:02 PM CDT
Andrew with an attitude…for some of you that’s hard to imagine. But that’s what his pain medication does to him. He gets a bit ornery some days – like today. Nothing I say is right. I told him the thermometer was the “grump-o-meter.” For that I just get a scowl. We’re back at the RMH after day two of this week.
Grandpa arrived Saturday before 11:30 a.m. By 12:30 we were on our way! It was a beautiful day and so we started walking. Within a couple blocks I heard, “Can we get a taxi yet?” My reply was, “Let’s walk a little more.” That conversation continued until we finally came around the corner of 48th and Broadway. “Hey – we’re at Times Square! I didn’t know I could walk all the way to Times Square!” (It’s a pretty good walk even for a mom and a grandpa since RHM is on 73rd and 1st!) So, we did our Toys-R-Us shopping! (I don’t pay much attention to what is where – it’s three floors of toys – but Andrew knows where EVERYTHING is! Tech Decks, Bionicles, Mucha Lucha characters – it amazes me!)
For a late lunch, we decided to try a new place – Mars 2112. It’s quite the eating establishment. When you enter you get into a “spaceship.” Between the video and the shaking around, you are taken to Mars, and the future! Once you’ve “landed” it’s all about the atmosphere. It’s as if you’re on the red planet – complete with aliens wandering around!
Sunday was another beautiful day, so we took Grandpa on a sightseeing bus tour of lower Manhattan. They are double decker buses and we sat outside on the top! We also spent time in Central Park. It still amazes me how many people are in Manhattan!
Monday, as always, was a long day in the hospital. It went well, but we didn’t get back to RMH until about 3:30. About 5:20 Andrew said he was tired and wanted to sleep. He got up about 10:00!! He didn’t have too much problem going back to bed by 11:30 either.
It was raining earlier today, but seems to be clearing. That’s good – because we need to get some exercise to work some of that medicine through his body. He continues to ride his scooter to and from the hospital. The BP is in control, there is no nausea and no vomiting. His pain has been kept under control pretty well with the medication. Basically things are easy compared to what they have been. So, why do I feel so grouchy? I guess I need a walk as well – and another prayer.
Ang
Monday, June 21, 2004 10:57 AM CDT
Friday afternoon! Hooray!
What a good week it’s been! I am so proud of Andrew. He has ridden his scooter to AND FROM the hospital the last four days!! We’ve also tried to go for extra walks in the late afternoon. Only Wednesday did he have any extra pain, but he’s not been too bad besides that – the painkiller seems to be working very well for him. No hives, no nausea or vomiting and I just keep increasing the blood pressure medicine, so we’re keeping that under control too!
Andrew is a bit worn out this afternoon. Right now there is a little boy sleeping on the bed with his arm around his softie (the blanket my grandma made for him before she died) and five small beanie type puppy dogs. Every other day this week he’s taken a nap at the hospital before we came back to the room, but that didn’t happen today. It’s pizza and movie night at Ronald McDonald House – so I think that’s where we’ll hang out.
My dad comes tomorrow. Andrew has decided we’ll head to Times Square and … Toys R Us… when Grandpa gets here! (Something different…?!)
Andrew and I met a new family yesterday. The little boy is named Canon. He is three, and is really a little “cannon ball!” He has been here since the end of May and is missing his older brother and sister, so having Andrew to play “Ninja swords” with – was a ton of fun. They are from Kansas City and very early in their treatment of Canon’s Neuroblastoma. I simply said to his mom, “You have a long road ahead of you.” He’s only finished the 2nd round of Chemo. They are collecting his stem cells this week and his surgery is planned for next week. In addition to the tumor in his belly, he has a tumor in his sinus area. Shortly after he was diagnosed he lost his sight because the tumor was growing and pushed on his optic nerve. The first two rounds of chemo and radiation have reduced the size of that tumor and his sight is back. Please add Canon and his family to your prayers tonight. All the families here are in different stages. Those of you reading this have different things going on in your lives. This verse can apply to all of us:
“Rejoice in hope, be patient in suffering, persevere in prayer.” Romans 12:12
Ang
Tuesday, June 15, 2004 9:58 PM CDT
Here we are again, back in New York for round 10! Tom reminded me that a year and a half ago, we would give anything to be accepted into this program. I know it’s the best thing for Andrew. I just had a difficult time leaving home. I wanted to stay and let Andrew start his summer vacation. He’ll miss the last part of his baseball season and the first couple weeks of his golf league.
Just last week we hit the 2-year mark from the day we went to “check on his fever” only to find out it wasn’t just a virus. Two years. It’s been a long two years and it’s been an incredibly fast two years. Sometimes Tom and I talk about how it has or hasn’t changed us. I know it has increased my faith and my belief in the power of prayer. Each day I pray for Andrew’s continued health and I thank God for all the healing he has done. I don’t necessarily want to remember all the details (I still cry if I go back and read some of the journal entries) but I do want to remember where we’ve been and what God has done for our family. Once again, my daily devotion book seemed to say it best this week:
“But take care and watch yourselves closely, so as neither to forget the things that your eyes have seen nor to let them slip from your mind all the days of your life.” Deuteronomy 4:9
Andrew and I arrived Sunday afternoon and settled in with no problems. We know the routine pretty well. We must look like we know what we’re doing too – the “cabbie” guys at the airport don’t even ask us if we need a ride any more. We get the little cart, load up our bags and head for the yellow taxi stand. Once at the Ronald McDonald House, I started in getting things cleaned up and unpacked, and Andrew headed right down to the video games. Then we walk our three blocks to “Food Emporium” to get our staples – bread, peanut butter, milk, and chocolate ice cream – to name a few! We had dinner at a café a couple blocks in the other direction and then took a stroll to an Italian grocery store down the block and got a big piece of chocolate cake to share sitting outside.
And now, we have two rounds of treatment behind us. Monday went okay, but was a long day. He had 3 doses of painkiller (narcotic) and it made him really itchy! Not hives, just itchy. So I slathered him in lotion. Today went even better – he only used 2 ½ doses of painkiller – and he wasn’t itchy.
Many times, Andrew has asked if he could bring his scooter along to New York. I always said no because I didn’t want to try and fit it in the suitcase or drag it on the plane. But, I thought maybe extra exercise might help get some of the medicine out of his system, so he won’t be so sick when we get home. I know airport security was curious about what was in our suitcase (I got the note that says they looked through it!) but it’s here and so far, we’re using it quite a bit! Yesterday late afternoon we headed to Central Park. It’s a long 7 blocks from RMH to the park. We were out and about for about an hour. Today, he rode it to and from the hospital!! And soon we’re headed out again. I know it’s good for both of us because I really have to walk fast to keep up with him!
So remember to pray a little extra this week – for Andrew – and all the children here!
Ang
Friday, May 14, 2004 4:21 PM CDT
Trifecta
Test week complete. CT, MIBG and Bone Marrow all negative. Dr. Bostrom called mom at work within a couple of hours of today's MIBG to let her know that all Andrew's tests were good. For some reason, I had no doubt going into this week of tests he was healthy. Tom
Friday, May 7, 2004 6:28 AM CDT
Well we got bumped from the national news because of the President’s news conference. Go figure. I'll update if we hear when they are going to run the story. Andrew is doing well. Tests start Monday. Tom
Wednesday, May 5, 2004 4:51 PM CDT
NBC News
NBC Nightly News should have the Caringbridge story on Thursday. Here it is Channel 11. May get bumped by things like war and elections but that is the plan for now!
Test week next week. CT scan, Bone marrow, and MIBG down at Children's Hospital. Found out today that we still don't have a HAMA so back to NYC in June for another round of antibodies.
Friday, April 23, 2004 11:08 PM CDT
Forty-one and one week – one very long week!
Right now I’m feeling a tremendous sense of peace. Andrew (after throwing up for 3 days and not eating all week) started to eat this afternoon (pizza?!) AND I have him hooked up to IV nutrition (just to give him a little jump start). PLUS, all three of my kids are sitting in the same room together watching the movie, “School of Rock” and laughing (something Andrew hasn’t done all week).
This afternoon I finally remembered to just ask God to take away the worries I was having today and all week. Prayer is an amazing thing!
My parents were here two days this week. Tom was home one day and I was home two. Each day we hoped Andrew would turn around, but it just seemed like he got weaker and weaker. Since it was Friday I decided we weren’t waiting any more. We went to the clinic earlier today and had his port accessed. All week he balked at getting anything IV. His argument was that he was drinking Capri Sun and Sunny D. Sorry, not good enough. Over the course of the last week he lost about 5 pounds and spent a good portion of his time sleeping! It makes a mom (and dad) very sad to see their child get weaker and weaker and the bags under their eyes get darker.
What will breakfast be? Chocolate chip waffles? Pancakes? Chocolate-Chocolate Muffins? Anything he wants!
So, another round of antibodies is completed – and recovered from (mostly). We’ll send a blood sample to NYC this coming Thursday. We’re scheduled for the complete round of tests the week of May 10. Baseball has started and I am looking forward to the greenhouse opening in our grocery store parking lot. We ease out of a not so good week and into a weekend and end of school year that will be “normal.”
Now, I know I prayed before today, but everything happens on God’s time and sometimes it’s hard to be patient. I had great devotionals this week – Tuesday was about trusting God and Thursday was about God answering prayers. I guess this week I needed to make sure I was “listening” when I was reading!
Ang
Friday, April 16, 2004 9:24 PM CDT
Ang's Birthday
I know I shouldn't tell but it's Ang's birthday today. Ang, Grandpa and Andrew returned home today from treatment. Andrew did well until the flight home. Northwest will have to restock the air sick bags on that plane. The ride home from the airport was also a sick one for Andrew. He is resting now and hopefully will recover quickly.
The day has been a long one for them. They arrived at the clinic early so that they could get on an earlier flight home. Grandpa brought a cake up to the floor for Ang's birthday and one of the nurse's. They sang Happy Birthday.
Tonight both sets of grandparents, Becky and family came over for pizza and more cake. Eileen came early today to clean and do laundry. Ang got presents and she unloaded her Chinatown gifts for the rest of us. We had a great time and I think that everyone is just happy to be home. Tom
Tuesday, April 13, 2004 6:39 PM CDT
“This ice cream is good!” (said with a mouth full of ice cream.) That’s what Andrew just told me. It’s Tuesday at 2:00 in the afternoon and we’re back from today’s treatment. Andrew even pushed his wheelchair part of the way back to RMH. Two days done in the week and it’s going well!
Saturday we did make it to Chinatown. It was a beautiful day and I was feeling adventurous – not adventurous enough to ride the subway. We took a cab. The place was packed with shoppers. One lady asked me if I knew of a good Chinese restaurant and I told her I don’t eat there – just shop! We found all sorts of great “Chinatown fodder.” By the time we got back to RMH, my dad was waiting.
On Sunday morning when Dad was out for coffee and a paper, he found a church about a block away. Episcopal. They had a service at 11:00 followed by an egg hunt for the kids. So we went. They sang my favorite, “Jesus Christ is Risen Today,” but it’s never quite as good as home. For all the reputation that Lutherans have for being reserved, we do like to sing (and we almost always sing ALL the verses)! RMH had a nice Easter meal at 2:00. It was sort of a rainy day. We contemplated going for a walk to Central Park, but that was a bit farther than we trusted the clouds for, so we just headed a couple blocks over and walked along the East River. It runs north and south between Manhattan and New Jersey.
Monday ended up being a rainy day as well, but it wasn’t windy and it was in the 50’s, so we did a bit of walking anyway – after spending half the day in the hospital room, it’s good to stretch our legs. Since I told Andrew our walk could include a stop at Block Buster Video, he was all for it! (There was a particular PS2 game he wanted to rent!)
This is our 9th visit to NYC. We’re “old pros” at it now (ouch – “old” is not a good word to use in MY vocabulary this week!) Sometimes it seems easier, and some things never change. I miss being home. Nick had a hockey game last night and Emily called to tell me all about her dance costume. Thursday night the kids have a band concert that I’ll miss. It’s wonderful to know we only have 3 days left in the week, but I still hold my breath. Anything can happen in 3 days. If we can just make it through until Friday…our own beds…
The rain is really coming down here this afternoon – even some lightning and thunder! Definitely “April Showers.” There are some trees in bloom all along 1st Ave. They have little clumps of white flowers, but I don’t know what they are. We’ve also seen tulips, daffodils and hyacinth.
“Come and see what God has done, how awesome his works in man’s behalf!” Psalms 66:5.
The hospital chaplain read that verse to Andrew and me November 2002, when Andrew was starting to heal from his stem cell transplant. It’s really a verse we could read each day, whether we are being healed, or looking at spring blooms after a long winter.
Ang
Sunday, April 11, 2004 8:33 PM CDT
Dinner out, Bingo, NBC News, Chinatown, Grandpa arrives
It’s Saturday morning now – and we are watching 7 cartoons at one time (thanks to the remote control abilities of my son!)
It has been a really good week – and it did go fast! My dad is flying in today to spend the second week with us – so it will be even better.
Looking back at the week, Wednesday was an okay day. We used a bit less dilaudid (pain killer). The doctor thought that might have been part of the reason for Andrew’s headache on Tuesday. But, less pain killer left him uncomfortable for a longer period of time.
I met a family from upstate New York Wednesday. They stay at RMH even though they’re only about an hour from home. Their kids were on spring break, so they were all five here for the week. They invited Andrew and me to go out for supper with them. We walked about 10 blocks to a great burger place (the weather was perfect for the walk!) It was just what we needed – to get out and be around another family – not unlike ours! Their oldest is 13, and he and his 9 year old sister were “bickering” over who was sitting where! Their youngest (4 ½) is the one who is being treated for Neuroblastoma. Marianne and Eric (mom and dad) are the same age as Tom and me (they met in high school). I think Andrew had a good time too and he ate his whole grilled cheese! I didn’t realize how much I needed our night out.
After we got back from dinner – it was BINGO night (we got off easy this time – Andrew won $4 – not a monster truck!)
Thursday was quite exciting for us also. NBC news is working on a story about CaringBridge, and we are one of the families they are talking to. It was a great diversion for Andrew, as we had the cameraman in our room for a while (I may need to get that kid into some sort of drama group!) He really did well on Thursday with his treatment! Maybe the fact that I had also promised him we could go to Toys-R-Us in the evening also kept him going?!
Friday went smoothly as well. I think what I am realizing is, the busier I can keep Andrew, the less chance he has to focus on the pain. So, he played with his new GI Joe action figure, watched cartoons, the clowns kept him entertained (and Andrew entertains them), we read stories and played games. We were able to get by with two doses of pain killer (Monday and Tuesday we used 3).
It’s beautiful out today, and I think Andrew and I will head to Chinatown since my dad won’t be here until late this afternoon. (Andrew has a shopping list he keeps adding to!)
I miss Tom, Nick and Emily. I wish I could be at my church on Easter morning. But it has been a pretty good week all in all!
“For I am the Lord, your God, who takes hold of your right hand and says to you, Do not Fear; I will help you.” Isaiah 41:13
God has certainly been holding our hands this week!
Ang
Thursday, April 8, 2004 7:12 PM CDT
Sorry this is the first entry since we've been here...the outgoing phone lines are not working here at RMH and that's how I usually get the info to Tom to post. Here's Monday and Tuesday...I'll get caught up this weekend...
Andrew and I arrived at the Ronald McDonald House late Sunday afternoon. Our flight was uneventful, which is how we like it.
Our Monday went pretty well. First, we found our way to the new Pediatric Day Hospital. Since our last visit, they moved from their temporary, small space on the 3rd floor, up to a beautiful spacious 9th floor. Wow! There are many individual rooms. It’s well lit, including a huge skylight that leaves the nurses wishing for sunglasses by mid afternoon. Andrew likes the great TV’s and DVD/VHS player for each bed. But my favorite thing is the wall with the fiber optic lights that are constantly changing color.
We met a new nurse who is great! When we talked about Andrew’s history of throwing up, she suggested we talk to someone at the hospital about “guided imagery,” a way to “get away” when he’s not feeling well. We didn’t need it Monday. There was pain, but no hives, and since it’s our first Monday, we didn’t have any issues with high blood pressure.
The evening was extra great – two of MY favorites! The students from the Swedish Institute of Massage were here giving massages, and the ladies from St Stephan’s Church brought supper (turkey, ham, meatloaf, mashed potatoes – a lot of comfort food!)
Tuesday was about the same, for the first part of the day. The pain was about the same. No hives, but he’s been very itchy. I think it’s a side effect from the narcotic, so I just keep slathering him with lotion. If I keep this up, he’s going to be very soft by the end of the two weeks!
Our afternoon took a complete downturn. Shortly after we got back to the RMH, Andrew started complaining of a headache – a bad headache. He started to rest but woke up suddenly – throwing up. He kept throwing up – four times in half an hour. This sort of panicked me. He finally rested and woke up about an hour and a half later – ready to start eating! After that we headed downstairs for the Easter Egg Hunt! We now have enough candy to last until the 4th of July!
It’s been a very up and down couple of days for me emotionally. It was extra hard to leave home this time. When we said good-bye at the airport, Emily was crying. Nick is spending this week with some friends traveling to Kentucky. I saw a long haired teenage boy (with big feet) in the elevator this morning – and it made me miss Nick. I talked to a mom I’ve seen here before; her son’s scan showed more tumors. I talked to a mom whose daughter was cancer free for five years; now she has relapsed. I try to keep remembering that billboard that we saw a couple months ago on 94 “Trust Me – God.” The day we saw it, I felt like it was a message just meant for Tom and me. Today there was a boy who came back to the Day Hospital to say hi to the nurses. He looked GREAT!! His dad said he was just back for a check up. The prayer in my devotion book today said, “Open my eyes to see You at work in the details of my day…” I saw God’s work in the smile on the face of that boy and his parents! I needed to see that. Just when you need it most, sometimes your faith isn’t as strong as it should be!
Keep praying!!
Ang
Links to check out: First link is Caringbride that has another link to the Kare11 News story, "Watch the Kare-TV Extra". Second is a link to a Caringbridge promotional featuring Andrew. You have to cut and paste these.
http://www.caringbridge.org/index.htm
http://www.graphicsalive.com/cb.htm
Wednesday, March 17, 2004 9:50 AM CST
No HAMA detected (no antibodies). So we head back to New York April 4th. I think it gets harder to go each time. I’m trying to be upbeat for Andrew, but I’m not too excited to go. We have been in NY 17 weeks out of the last 14 months. If Andrew never creates his own antibodies, the therapy continues for a total of two years. Which would mean we only have four more!
Andrew is doing great! He’s been playing a lot of hockey and really gaining strength. Just the other night a hockey dad commented to me how much more energy Andrew seems to have! His school conferences went well; he’s doing a good job keeping up with his class. He’ll have his baseball tryouts just before we leave for NY, and if he’s feeling up to it when we return, he’ll be at his piano recital. And he’s all signed up for a summer golf league. (I told him we have to review those multiplication facts once a week during the summer too!)
I decided to be the mean mom and move the treatment up a week earlier so it’s during Andrew’s spring break and he’ll miss less school. Oh boy, what a way to spend spring break! But we already have 2005 planned – we’re all five heading to Phoenix to visit Grandpa and Grandma!
For anyone interested, on Sunday March 21st, the KARE 11 extra at 10:00 is supposed to have a story about Caringbridge. It has been such a wonderful tool for our family. Mark Daly spent some time interviewing and taping at our house! I don’t have any idea how much of the story will center on our family.
I’ll be in touch from NY -
Ang
THANK YOU GOD FOR MAKING ANDREW HEALTHY!!
Wednesday, February 25, 2004 12:32 AM CST
You can’t see the sunrise in Manhattan – the buildings are too tall to see the horizon. When we’re home, Andrew and I are usually on our way for the day at about the best time of the morning to enjoy the colors. Some mornings, even if it’s going to be a cloudy day, there is a time when the sky is unbelievable as the sun moves up. I think that’s exactly how God works. Even when things don’t look like they’re going so well, there is something bright and hopeful, and then it’s so good it’s unbelievable! That was how last week was for us.
Our return trip from New York didn’t go so well. For most of the flight, I held the air sickness bag for Andrew – just in case. Unfortunately, he started using it on the drive from the airport to home, and continued for two days. He didn’t eat for another five days after that. We ended up on IV’s for a week. We had a good two weeks in New York, all our tests had come back with perfect results, but we went over that “cliff” that I’m always afraid of. Tom and I took turns at home with Andrew. We took him for walks. The fresh air and sunshine felt good in our faces. But the week seemed to drag on.
We don’t know why Andrew gets sick after his antibody treatment – most kids don’t. Tom and I suspect it’s the narcotics that he receives for two weeks. They are so hard on his little body and have so many side effects, plus the fact that he seems to have withdrawal symptoms.
But this past Saturday morning, he got up, and started eating and drinking. Sunday he was back at Sunday school and Monday he was back at school! This morning he was complaining his legs were sore (I explained that was from sliding on Sunday and gym class on Monday!) He eats like a boy who missed a week of eating! It’s like the “so unbelievable good” of a beautiful sunrise.
So we continue…Thursday we will have blood drawn and send it to NY. If he’s creating his own antibodies, our trips will be done – and our treatments will be done (that would be scary). If he has not started to create his antibodies, we will head back to NY again in April (and that is getting tiresome). Which is better? What do we pray for? It’s in God’s hands, so we just pray for what is best for Andrew to remain cancer free.
I read this the other day:
“But since the power of prayer is in the one who hears it and not the one who says it, our prayers do make a difference.”
So we just pray.
Ang
Friday, February 13, 2004 6:46 PM CST
Going Home!
Friday – nearly 2:00. Our suitcases are packed. The taxi will be here about 3:30.
I will make this quick. We got the test results on Monday. Everything in the MIBG scan looked fine! YES!! Sorry to have kept everyone waiting.
Our week has been uneventful. We haven’t done anything exciting or “touristy.” We had Bingo again Wednesday night – and this time Andrew won the BIG prize. A remote control monster truck with Spiderman on it (which will arrive at our house Tuesday – since it wouldn’t fit in the suitcase!) My dad also won $10 in the coverall!
Each day has been pretty good for Andrew as well – much less pain medication this week. No hives, no problems with blood pressure, keeping on the weight, and only a small amount of nausea last night. Each morning I am the “mean mom” and make him do homework!! Which is worse? The pain from the antibodies or the pain of learning multiplication?!
And after such an “easy” two weeks, why is my patience so thin? I guess I haven’t had to focus quite so hard on Andrew? Maybe it’s also because I broke my own rules this week – I’ve been reading other web sites of children with Neuroblastoma. Some of the children that I’ve met here are not doing so well. It makes me sad and angry at the same time. I want to get out of here where the sickness is so real. I want to get back to Minnesota and my regular life. I’m within hours of it…
Today is one of those days I pray for peace in my heart; contentment for all that I have been given.
Ang
Sunday, February 8, 2004 8:03 PM CST
And now it’s Sunday. We tried a new place for breakfast this morning. A little café a couple blocks down. So small and so busy and really good! It’s the first morning here that I would say it’s a bit cold. Temperature is 23 and the wind chill is 9, (Andrew wore his gloves for the first time this week) but the sun is wonderful between the buildings.
I’m happy to report – it’s been a good few days! My dad arrived Thursday night about 7:30. Andrew’s treatment went very well Friday! He had the least amount of pain medicine that he had all week, no hives, no nausea and the blood pressure was great!! Friday afternoon we had a scan – the MIBG Scan – or tumor scan as I call it. Thursday he was injected with a dye that would be attracted to any neuroblastoma tumor in his body. The scan takes about 1-½ hours. I’m only a bit anxious to get the results from the doctor on Monday or Tuesday. I already know in my heart what he will say.
Friday night we made our regular “pilgrimage” to Toys-R-Us! Andrew had a gift certificate from his birthday that was burning a hole in his pocket. After MUCH deliberation as to the best way to spend it, we left with two Lego sets and a transformer. Then we had dinner at TGI Friday’s. Our “toast” (two beers and a lemonade) was to the end of a great week!
We spent some time Saturday at the Museum of Natural History. It’s one of our favorite places. When we left, we thought we’d only walk partway, then catch a cab – but the weather was perfect for walking. It was in the low 40’s, and no wind. Central Park is even beautiful in the winter! Andrew kept asking to rest, but my dad and I decided that was because for every step we take, Andrew does two skips, a hop, then twirls around! His energy level is unbelievable! We ended up walking all the way back to RMH.
We rented a movie and ordered Domino’s for supper. Grandpa called Grandma – who sounded lonely and we talked to Tom and the kids, who had spent their day at Nick’s hockey tournament in Minnetonka and Emily’s tournament in Woodbury. Even when things are going well, I wish we were home.
God continues to be with us here in NY. He carries Andrew through the pain, but this weekend, I think Andrew was skipping and hopping with God – and so was my heart!
Ang
Wednesday, February 4, 2004 3:42 PM CST
Wednesday February 4th
Andrew and I arrived at the Ronald McDonald House Sunday night around 8:30. Sometimes people have asked me if Andrew gets apprehensive about his therapy in New York. He takes it in stride I guess. We don’t dwell on it. It’s just what we do and we keep busy up until it’s time to leave. We were in Kasson Friday night and Saturday for Emily’s hockey tournament. Sunday Andrew played a hockey game, and then played in the snow and I simply threw his wet coat and mittens in the dryer so we could leave for the airport on time!
So we’re here, and we have 3 treatments behind us. Monday was okay. There was pain, but we expect the first day to be a bit rough. Yesterday however, walking back to the RMH, the rain coming down mixed with my tears. There was so much pain. It leaves me feeling so helpless… Andrew needed extra pain medication and had some good hives going. He was nauseated and I was scared. I think about moving ever closer to a cliff that once we “go over” there is no going back as long as we’re here in NY.
Today’s treatment was less painful, but there were still hives, and the blood pressure is slowly climbing. But the sun is shining, it’s over 40 degrees (sorry – I know those of you back home are still below zero this week) and best of all, he’s not feeling nauseated today!
Tonight is Bingo night. It’s fun for the kids – but I dread the fact that the prizes are usually big – and not easy to get into a suitcase. I know – I just need to relax!
My dad is flying in from Phoenix tomorrow. It will be so good to see him! We had hoped to take the kids to visit later this spring, but the trip isn’t going to work out this year. As happy as we are that my folks are able to enjoy the winter in Arizona – we miss them terribly!
Yesterday’s devotion ended with this thought:
“Then trust God to take care of you and keep you safe.”
It was what Andrew and I needed.
Ang
Wednesday, January 21, 2004 8:09 PM CST
Trust Me.
-God
Billboard on Westbound I-94 from Mpls. To Brooklyn Park
Test Results
Dr. Bostrom called tonight. Andrew got back his test results from Monday’s CT scan and bone marrow biopsy. He continues to amaze and be cancer free. It has been that way for a year now. He has one more test when he and mom hit NYC for the two weeks of antibodies. That will be Feb. 1 through Feb. 13.
I don’t write much anymore. Many of the Caringbridge sites follow a pattern. As the roller coaster days of anguish turn to normal days of living the less “therapy” I/we need. Writing is my substitute for Bob Newhart’s Group Sessions. I’m talking about the classic 1970’s Bob Newhart with Susanne Pleshette not the 80’s crap with Tom Poston and the Darryl brothers.
I write less because I want to separate myself from cancer and connect more with my old self. Of course the old self is gone…not completely but… “I wish I didn’t know now what I didn’t know then”.
Test Week comes every three months. CT scans, bone marrow biopsy, MIBG scan. You would think that the tests would get easier to handle. Take it from me; I wouldn’t have to write tonight if it were easy.
Monday morning we arrived early for bone marrow at the short stay of Minneapolis Children’s Hospital. Even though Andrew had been running an up and down fever all weekend (103 degrees) the nurse said he looked great. She turned to me and said, “Are you feeling O.K.?”
From biopsy we were to move to radiology and CT scan. Since things were running behind in surgery we were sent to get our CT out of the way first. This is where my day (day and a half) fell apart. Once in the CT room the technician greeted us kindly, injected Andrew with contrast and mom and dad put on their lead aprons (don’t want to get cancer…of course the scanee doesn’t get an apron…ironic).
The first scan is of the skull. The technician sits in another room on the other side of a window. After the first scan we could see through the window where the technician sits. Something is wrong. Someone came into the technician’s room. They look seriously at the scan. Then another two people were called into the room and again they seriously examined the scan. One looked like a doctor and the other a student.
“Hey, come on in here everybody, let's all have a look."
After what seemed like a very long time the technician came back into our room, hurried though his instructions for the next scan and left again. The friendliness went away from his demeanor. I asked him if there was anything wrong with the machine and he didn’t look at me. Just said, “No”. Why didn't you look at me?!?
After the whole body scans the technician returned and walked us back to short stay surgery. He didn’t say a word. All business. Why did all those people have to look at his scan? How come it took so long? He KNOWS something. I know it. Ang knows it. Ang doesn’t say a word to me. Doesn’t have to. She grabs my hand. We walk the Green Mile. Silently we sit in the waiting area during the biopsy (surgery).
Silent tears running down the face. Not hers. She has complete trust in God. Wish I could give myself over like that. I’m sick. I want to scream. “Let’s get drunk and wreck s--t”. Marty and I used to say that in college when feeling down and mood altering was in serious need. Usually did the former, forgot why we were down, and never got to the latter.
Turns out all the problems/delays during the CT scan were related to finding the proper records to compare Monday’s scan to a previous scan. Learned that small detail a day and a half later. Tom
Trust Me
-God
Wednesday, January 14, 2004 1:30 PM CST
Happy New Year!
And what a wonderful New Year it has been at our house!
Each day I look at Andrew and see the miracle we asked for just over 18 months ago! I think he’s almost back to his “normal” self! He’s been skating a lot – both indoors and out, which I think has really helped him gain strength (that and the glasses of whole milk mixed with Boost and Nesquik!) And, he has started to cause trouble for his teacher (any of his teachers from first grade and before know what I mean! He can be quite mischievous.) He chases our dog Molly around the house until she flops down with exhaustion and, he has recently been scolded by his mom (which probably makes his brother and sister think – “Finally things are back to normal!”).
Last week we had a regular visit to the pediatrician (not the oncologist) for pink eye – a normal childhood sickness!
On January 19th, we’ll get a CT scan and a bone marrow biopsy done here at Children’s (I guess that’s a new “normal” thing for us every 3 months) and then, on February 1st, we’ll catch a plane to New York again for two weeks. Okay, so that part we don’t ever want to make a “normal” part of our lives. But we may have to continue that until the end of 2004. We have however, scheduled our flight AFTER the hockey tournament that day because excessive hockey is normal at our house! I want to thank Scott Hayes at General Mills for giving Andrew and me frequent flyer miles for this trip!
We continue to pray each night for Andrew’s health, and for all of you who pray for us! I hope that fervent prayer has become “normal” in all of your lives as well! Angela
Friday, December 26, 2003 12:10 AM CST
Andrew's 9th Birthday
By this time nine years ago Andrew was born. We arrived at Mercy Hospital at 11:18 am and he was born at 11:40 am. Always in a rush.
The birthday boy has scripted our entire day. He has chosen a Hummer H2 chocolate Birthday Cake, movie (Haunted Mansion) and Fuddruckers for dinner.
Tuesday, December 9, 2003 7:13 AM CST
PLANES, TRAINS AND AUTOMOBILES
Today is Sunday December 7. One year ago today we brought Andrew home from the hospital after his stem cell transplant. Today IÂ’m bringing Andrew home after spending two more weeks in New York for antibody treatment and 48 hours stuck in New York airports due to a major blizzard. (IÂ’m writing this journal entry on the plane. WeÂ’re about an hour away from landing in Minneapolis having left Cleveland about an hour earlier.)
We had planned on leaving NY Saturday, but changed our flight to Friday hoping to beat the storm. After a 2 hour cab ride (that usually takes 30 minutes) to LaGuardia, we found out the Friday flight was cancelled. We settled ourselves into some chairs and hoped the storm would blow over during the night. There would be no way to get a cab back to RMH – the roads were that bad.
I think Andrew had quite an adventure at the airport. We found several floor mats and piled them up for Andrew to sleep on. I dug a sheet out of the suitcase, and he got a good nine hours of sleep in his little “bed.” My folks and I however did not sleep well in the chairs. My dad had found the food court and got some beer and pizza – so we made the best of it. My prayers that night included a thank you that Andrew had made it through all two weeks of treatment and felt GREAT!! There was no vomiting and we were heading home to start our Christmas season.
More snow came in the night and the Saturday flights were cancelled. We found out our best bet was to get to Newark Airport. Nothing would be going to Minneapolis from LaGuardia until Monday. We got seats on a Saturday afternoon flight out of Newark on Continental to Cleveland; from there we could get to Minneapolis. The cab ride wasn’t too bad – the roads weren’t in great condition, but it was early enough on a Saturday that there wasn’t much traffic.
Unfortunately, most of the Saturday flights from Newark got canceled. The good news is they had cots at Newark! We talked about trying to find a hotel. First, most of them were booked, and second, the snow was coming down very heavily again. If we got to a hotel, could we get back to the airport?! My folks were able to get on an 8:00 a.m. flight Sunday to Phoenix and Andrew and I were on the 10:20 (to Minneapolis via Cleveland). We decided the cots were a great improvement and weÂ’d continue our adventure, adding another airport to our sleepover experiences.
About 9:30 p.m. Saturday, Andrew was busy running around (I gave him an area he had to stay in – where I could see him) and he came running to me crying, “I want to go home!” Well, my tears started as well. I suppose we could have just stayed at the Ronald McDonald House until Monday, but we always have this incredible desire to GET HOME. We just hugged each other for a while, and hoped for the storm to clear. We fell asleep about 10:30 p.m. holding hands. At least we had Grandpa and Grandma with us – I don’t think we would have been able to get through all this without them.
I kept in touch with Tom and the kids back home regularly. Tom keeps telling me to call back when the Polka Band and I get to Milwaukee. Reference to the movie “Home Alone”. We felt more like “Planes, Trains and Automobiles”.
Today has gone well. The flight from Newark was delayed slightly as they de-iced the plane and waited for several other flights, but we had no problems meeting our connecting flight. We have however had to use three airsick bags. AndrewÂ’s food and eating schedule has been really bad since Friday and it took its toll. ItÂ’s just been a long 48 hours and I think we need to get some sleep in our own beds tonight (and we need to shower!)
We’re almost home now. There is a really happy boy sitting next to me – and I’m a really happy mom and wife. I can’t wait to take my Bear Cub home again!
LaterÂ…
Tom, Nick and Emily had a wonderful homecoming for us. They had put up Christmas lights and decorated the whole house! They had the Christmas music playing, candles burning and a big tree that weÂ’re all going to decorate together!
Enjoy the season! Share lots of laughter, hugs and love! Remember the first Christmas gift that gives us hope every day. Ang
Tuesday, December 2, 2003 12:53 AM CST
Monday afternoon about 3:00
Monday is always a bit tough. Today there were four doses of painkiller, ice packs, oxygen, and some benedryl for a few hives. Thankfully there hasn’t been any vomiting and his blood pressure is still good. We’re back at the room, but Andrew is out like a light.
My folks are here. They got here Friday night not too long after Tom and the kids left. Emily was hoping their flight would get cancelled so she could see Grandma and Grandpa. They flew here from Arizona where they have already settled in for the winter.
Andrew had a great weekend! We did a lot of walking, which was good for all of us. We did China town on Saturday, and Central Park and Grand Central Station yesterday. Nick would scold me – I didn’t take the bus or subway. We walked a LOT and took a few cabs.
Tonight there is a dinner here at the house. The entire month of December is packed with special dinners, events and projects here at RMH. Saturday night Andrew and I made a gingerbread house (it was actually made of graham crackers and more than a tub of Betty Crocker frosting and all sorts of candies!) He had a great time and wore half of his creation back to the room.
I’m a bit sad this afternoon. I talked with Tom and he told me one of the guys that he works with lost his wife in a car accident this past weekend. She was in her late 50’s. I suppose not too long from retirement. They were going on a cruise next month. We are saying extra prayers for Al and his family.
Make sure you hug those you love and tell them so – often.
Thursday, November 27, 2003 5:42 PM CST
It’s Thanksgiving evening, about 6:00. We have had a wonderful three days!!
Tuesday went even better than Monday. After we left the hospital, Andrew never stopped. It was Emily’s (and my) choice for the evening, and we went to the new American Girl Place on 5th Ave. (the original store is in Chicago). We also saw the Christmas windows at Saks, St. Patrick’s Cathedral and stopped at Rockefeller Center (the tree currently is surrounded by scaffolding awaiting its lights). We saw skaters, but they were using figure skates. I told Nick I didn’t think he could skate with figure skates! Andrew said we’d have to get a picture to show his buddies – we didn’t get on the ice. After stopping at FAO, the five of us had dinner at our favorite local Mexican restaurant.
And if Tuesday wasn’t good enough, Wednesday was even easier! Andrew got a bit less pain medication that day, and never asked for the ice packs for pain. By the time Tom and the big kids got to the hospital, Andrew was on his way out! After a bit of lunch (YES – he’s eating this trip!!!) we headed for Times Square – and – Toys-R-Us! Well, it’s certainly a holiday here in NY – the place was packed! We continued to wander, and saw where the David Letterman show takes place. We headed back to the east side, and Patsy’s Pizzeria.
This morning, we had to be in the lobby by 7:00 a.m. to catch the bus to Times Square for the Macy’s Parade. We watched from the corner of 48th and Broadway on the second floor of the Olive Garden. We could see the crowds below, and in some places they were 20 deep! We all had perfect seats! As we watched we were even visited by the mayor of New York!! I think the ride back was even more fun for a good portion of the group. The bus we were on was a police bus. To get out of the crowds, he put on the lights and sirens, and away we went! We all cheered and laughed!
We met a family today from Texas who lost their son a couple years ago. They had spent a lot of time here in NY and at RMH. So, in memory of their son, they come here now each year to serve other families. That touched me so much. The dining room was decorated beautifully and the food was so plentiful. I missed my mom’s pie – but it was still a wonderful meal.
The kids left a couple hours ago to see the movie “Elf.” One of the House Volunteers and several NY Police took a group of the kids. Andrew is having such a wonderful week being a normal kid with his brother and sister. He’s had very little anti nausea medicine, no vomiting, and no problems with his blood pressure.
Tom and the big kids leave tomorrow afternoon and my parents fly in tomorrow night to spend next week with Andrew and me. Grandma wants to go shopping!
We have so much to be thankful for. We have come a long way since last Thanksgiving. In my devotional book today it said, “For Thanksgiving, think not only of the material things God provides for us but of the spiritual things as well: courage, peace, and hope.”
I know our family has been given all of these things – and more.
Tuesday, November 25, 2003 1:13 PM CST
It’s Monday afternoon – 2:15 and we’ve completed our first day of this round of antibodies. It actually went pretty well! Andrew’s blood pressure is perfect today, no hives and as of right now, no vomiting. He did have all three doses of the painkiller and at one point the pain medication just wasn’t helping (which was the same time Nick and Emily decided to start fighting – so you know where my blood pressure was). He’s resting now, with the Rugrats on the TV. I don’t feel like he’s at his strongest point health wise this week. His weight is okay – about 57 pounds and he’s grown half an inch since our last visit. But last weekend he had the stomach flu, which really seemed to wipe him out. Then it changed into a cold, and he just hasn’t eaten very well. Tom and I both commented that he’s just looked so pale this week. His Red Blood Cell count was just a bit low – so he needs more iron. And he’s not a huge red meat eater, so I’ll have to figure out something else.
All five of us flew in Friday evening. It was a completely uneventful flight arriving about 10:00 New York time. We decided to come a bit earlier so we could have a fun weekend. And sorry to say to those of you in Minnesota – it was an absolutely beautiful weekend here! Sunny and 60’s!
Saturday we did a good portion of our Christmas shopping!!! (That’s huge for me to have so much done BEFORE Thanksgiving!) We went to a couple street fairs and Chinatown. My children have certainly learned how to “wheel and deal” there. Nick completely impressed some woman who watched the entire process – she came up to Tom and asked, “Are those your children? That’s amazing how they got that deal!” I’m not sure what sort of skill we are building here? But we had fun.
We ordered the kids Domino’s for supper and Tom and I went out to one of our favorite Italian places here (Nick does alright babysitting and so I didn’t mind leaving them for a short time). The tables are close at the restaurant and we happened to strike up conversation with some native New Yorkers next to us. They gave us more ideas of things to do in the city.
Sunday we slept in, and then took the subway to the Bronx Zoo! Here’s a good visual – our family on the subway heading towards the Bronx. Not a lot of Norwegians or Swedes taking the No. 2 subway through Harlem to 180th Street in the Bronx. I imagine we were quite the sight! November isn’t the busy season at the zoo – so we were able to see quite a bit in a short time. The lion was one of our favorite things. It gave us a good show – stood up and just roared! The zoo has a light show in the evenings at this time of the year. But we thought we’d better get back on the subway and head to Manhattan before nightfall.
So, our week has begun. Each night the kids pray that Andrew’s week goes well and that maybe this time he will start making the antibodies himself. I had the thought this morning that if he does make them, we’ll find out just before Christmas – and that would be the best present our family could ask for. Please keep Andrew in your prayers. Mom
Sunday, November 2, 2003 6:36 PM CST
Just a quick update today…
Friday we got the rest of the test results back – and everything is GREAT!! It was a tough week for Tom and me. The waiting was not easy. I got an email that I thought was a good “New Motto” for our family:
Do not let the worries of tomorrow take away the joys of today!
Andrew is so healthy today and enjoying being an 8 year old – we have to focus on our daily joys and blessings!
The blessings we have include the people who so generously gave us frequent flyer miles this past Friday. Instead of splitting up the family all five of us will be spending Thanksgiving together in NYC!!
The social worker at Sloan-Kettering said that holidays are special at the Ronald McDonald House so we are looking forward to sharing the experience. Once again, THANK YOU for sharing with our family!!
Ang
Wednesday, October 29, 2003 5:35 PM CST
Okay – so I have had very good intentions, but good intentions don’t update the website!
Our Make-A-Wish trip was WONDERFUL!! The Karps (who like to “do it all”) went to seven (yes – 7) different theme parks in five (yes –5) days! We arrived at Give Kids the World about noon on Sunday the 12th. This is where most of the families stay when taking their Make-A-Wish trip to Disney. It’s a beautiful 51-acre area with 69 Villas (2 bedroom, 2 bath, 2 TV, living room, kitchen, washer/dryer), a miniature golf course, a small lake, a theater, huge game room, pool, ice cream parlor (open 9-9!) and a dining room (for unlimited breakfast and dinner with the food supplied by Perkins)! It’s about 20 minutes from Walt Disney World. We were given passes to Disney (and made it to all four parks – 2 of them twice), Sea World, and Universal (which now has two park areas). We really never got a chance to enjoy the activities at Give Kids the World. I reminded the kids we had our “relaxing” trip during the summer – this was a “see it all” trip!
We all had our favorites (Andrew went on the Buzz Lightyear ride at the Magic Kingdom twice, Nick and Emily went on every big roller coaster they could, and Tom’s favorite was the Spiderman 3D ride at Universal Islands of Adventure) – and our least favorite (I didn’t like the Mission Space ride at Epcot.) We were always given special treatment – like being able to go to the front of the lines! But one really special treat was at Sea World. We were able to spend a few minutes with a trainer in the dolphin area. He had a small cooler of fish and we were all able to feed the dolphins and touch them. He even had Andrew do some hand motions that had the dolphin jumping out of the water and “talking” to us!
The time went way too fast! We never made it to the ocean, or to a waterpark (the weather was great!) Sometimes there was a bit of stress (all five of us together all day long!) But it was great! Such a treat for our entire family!
So now we’re back to reality! We’re at our 3-month test time. Monday Andrew had a bone marrow biopsy. When he was under they also gave him 5 shots! (The high dose chemo that killed his bone marrow last year also took away all his immunizations – now we have to start over with all of those!) He was very stiff on Tuesday. Today is a CT scan and today and tomorrow he has the MIBG (tumor) scan. Last week we sent his blood to New York to see if his body is creating it’s own antibodies. Waiting for all these results is tough – even though I tell myself the results will be perfect!
UPDATE –
We got the results from New York. No antibodies – so we’ll be heading east again within the month. (If anyone has any frequent flyer miles – I was hoping Tom, Nick, and Em could come for part of the trip…)
Bone Marrow biopsy is negative!! Yea! Thank you God!
Saturday, October 11, 2003 8:46 PM CDT
It’s Saturday night at 8:30. The “Queen” of packing is wrestling with her subjects – “Did you go over your list? Did you pack your sunglasses? No Emily – you don’t need ALL of that.” There is great excitement here – the limo is supposed to pick us up at 5:15 tomorrow morning for our fabulous trip to Disney World! It almost doesn’t seem real, maybe because we weren’t sure if it would really happen this week.
You have all continued to pray, and Thursday morning, Andrew started eating – and hasn’t stopped! It was like there was an “off/on” switch. He is a completely different boy than Wednesday!
I need to get back to the suitcases and backpacks and I think I’ve told Emily about four times to get in the shower! I doubt any of them will go to sleep soon…!
Ang
Wednesday, October 8, 2003 1:24 PM CDT
It’s Wednesday. I’d like to say the last few days of our trip to New York went well – but they didn’t. Andrew hasn’t eaten since last Wednesday, and has continued to throw up since that time as well. He really went down hill last Thursday (Oct 2). Tom and I decided we didn’t even want him to receive the antibodies Friday (Oct 3). We just wanted to get him home to start healing - again. Our trip home seemed long, but it was certainly good to be home.
I’m feeling a bit discouraged. It’s been almost 16 months of this now (although we have had good days/weeks during the 16 months). This Sunday, Oct 12, we are scheduled to leave for Andrew’s Make-A-Wish trip to Disney World in Florida. The obvious question is – should we go?! We can’t take a boy to Disney who isn’t even able to keep fluids down! I had so hoped to take a strong, healthy boy. Now all I want is a boy who isn’t throwing up and who can eat and drink. We’ll have to use a wheel chair to get him around. He doesn’t have much energy or stamina and has lost at least five pounds again. I want him to have a wonderful time – it’s supposed to be his trip.
And of course, it’s for the other kids too. The question has been asked since our return last Friday – are we still going to Disney? Nick and Emily don’t have cancer, but they have a little brother with cancer and are part of a family that has had to deal with this monster. It’s tough for them too – just in a different way than for Andrew.
Andrew needs some extra prayers said for the next couple days. He needs to do a lot of healing before we leave Sunday morning. When I wake up in the morning, I’ve been trying to remember to think, “This is the day the Lord has made, let us be glad and rejoice in it.” I try to think right away of something to thank God for. Maybe it’s that Andrew slept through the night without throwing up – maybe it’s that we have our warm bed to sleep in. I am trying to have faith that I can wake up Sunday and thank God that Andrew feels well enough to enjoy his special trip.
Thank you for your prayers.
Ang
Wednesday, October 1, 2003 1:59 PM CDT
Andrew slept well after yesterdays round. So well he was wide-awake when it was time to go to bed for the rest of the civilized world. We did get to watch most of the Twins kick butt on the local team. Go Twins!
Today’s round seemed to go very well in terms of pain and hives. He is having a hard time with the connection to his port, which is giving him anxiety. They have to keep maneuvering it, which pulls on his skin and hurts. If he has problems they have to change the line and he hates that. We had a new nurse (not new to the job, just new for us). We are used to a routine and a certain amount of familiarity so things just didn’t flow as well today as in past rounds.
As you know they take good care of the kids and parents around here in terms of activities and things to do. Well...the RMDH gave us tickets to the Rangers Vs. Devils game AND the hospital offered us free tickets today to the Bruce Spingsteen concert at Shea Stadium. Unfortunately both are tonight. Ahhhhhhhhhhhhhhh!!!!!
Tonight’s Springsteen concert proceeds go to Memorial Sloan Cancer Center, so they have several tickets for patients and family.
“Andrew, you have a choice to see a pre-season hockey game between two teams we don’t follow OR SEE DAD’S FAVORITE, BRUCE SPRINGSTEEN AND THE E STREET BAND PERFORM AT SHEA STADIUM IN THE LAST LEG OF A TWO YEAR WORLD TOUR?”
“Hockey”
“ok. go rangers”
Monday, September 29, 2003 2:54 PM CDT
I had been away from the clinic for a couple of months. Not a lot had changed. Weigh in, BP check, get our room, change dressing on his port, pre-meds and start 3F8. He did not have hives today but the pain necessitated 3-1/2 doses. He usually tops out at 3 on “bad” days. Nice to see Dr. Kushner again and some of the familiar faces. He and mom are resting right now. He wanted to play video games when he got back to The House but nausea set in and we all felt it was best to rest. He agreed. Four more days on this round.
Looking forward to being back in Mpls on Friday night. Tom
Sunday, September 28, 2003 11:26 AM CDT
Joined Ang and Andrew on Saturday. Arrived at JFK yesterday morning…luggage went to Detroit. Today is day two on the underwear. Andrew’s boxers are too small and thankfully (for both Ang and I) hers are too. They have tracked my stuff down and said my bag should be in Manhattan sometime today. Come to think of it... NWA didn’t say I would have it... just that it would be in Manhattan. I may want to make another call.
Otherwise the trip was good. Ang and Andrew are in good spirits. The desk at RMDH scooped on three comp tix to the Yankees vs. Orioles for a late afternoon game. We caught the 6 to E. 86th and the 4 to 161st/Yankee Stadium to see Roger Clemons pitch his last regular season game before retirement. By the way the food and drinks at Yankee. Stadium is expensive and REALLY bad. I would take a Hormel Dome Dog any day. Go Twins!
We had Dominos when we got home.
Today looks to be a rainy day. The House had breakfast for everyone and is heading for the Jets/Cowboy’s game. We are passing (pun?) on this trip. Andrew is feeling good but the nausea seems to come and go. The medication the doctors gave us in Mpls helps to keep that in check. Ang hooks up the Zofran pump in the morning for about ½ hour and he gets pills during the day. He still keeps up with the pain meds on the weekend to a lesser degree so he doesn’t suffer withdrawal. He keeps up on the BP meds as well.
Mysteriously had a nose bleed last night. He has enough platelets (380) to stop the bleeding yet it seemed to last 15-20 minutes. He was anxious because he remembers he had some marathon nose bleeds during chemo. Mom reassured him this would stop soon.
“Were you picken’?”
“no”
“I don’t believe you!”
“maybe”
Mystery solved. Tom
Thursday, September 25, 2003 9:25 PM CDT
It’s Thursday night about 8:00 and believe it or not, I’m having a hard time putting some things done for this journal entry.
I’ll back up and fill you in since Tuesday afternoon. We did in fact head to the Toys-R-Us in Times Square about 4:00. Traffic was crazy, but when an eight year old is headed for one of the biggest toy stores in the nation, he is happy no matter what!
Our Wednesday went pretty well. There was Bingo here at RMH in the evening. We won a cool prize (a basketball hoop that goes over the door) to fit into the suitcase!?
Today was a bit tougher. (I’m so glad Tom will be here on Saturday.) Everyday the antibody “drug” that is pumped into the children is a different batch – made each day I guess. Some days it just seems to cause more pain all around than others. Today seemed to be one of those days. Today there was more crying all throughout the clinic - our little roommate Bryce (he’s 3), my son, and others. As I sat there listening, the tears came down my face. My heart cried out. “Why does God let these children suffer?” I try to think positive, I try to think of how we are God’s tool, but sometimes I just can’t understand it.
Andrew is smiling tonight. He spent time with the PS2 machine and I made him a grilled cheese for supper. He of course has unlimited use of the remote control (until Saturday when dad gets here and since the Twins will be playing the Yankees…?) and he’s bouncing and shooting his new basketball all over. I just got a hug and a kiss and an “I love you Mom.” What a way to end my day!
Tuesday, September 23, 2003 6:50 PM CDT
Last Friday when I got home, I held onto Emily and I cried. Andrew and I had been home for eight weeks – and it was wonderful. My heart felt so sad to be leaving Tom and Nick and Emily. Em was going to start her Pointe class (she’s been doing tap and ballet for many years). Nick was asked by his band director to audition for the state honors band. Andrew’s been on the ice four times this month and is now talking about being a professional hockey player! And when I come around the corner of our street and see that Tom’s car is in the driveway and my heart jumps - these are the things that make up my life each day.
Sunday when we arrived at JFK, my heart felt a bit lighter. It’s a beautiful airport – at least compared to LaGuardia, and it wasn’t very busy on a Sunday at noon. The weather was perfect and the taxi we caught was a jeep and practically brand-new. Now the fact that the Dalai Lama was in town at Central Park caused some traffic problems throughout, so it took us over an hour to get to Ronald McDonald House – but we weren’t in a hurry.
Sunday afternoon we got to go to a movie screening in a fancy theater. The movie is called “Good Boy!” Very cute. I laughed and given my emotional state, a few tears slipped out. If you’re a dog lover, it all makes perfect sense!
Monday, we headed to the hospital. We had a pretty good day for a first Monday back. There was pain, but no hives, no vomiting and absolutely no problem with Andrew’s blood pressure. We stopped at Block Buster on the way back to RMH and rented a PS2 game. As soon as we got back Andrew was off and playing. Wow! Our first day was over – and it just wasn’t all that bad.
It’s Tuesday about 2:30 EST. We’re back from the hospital. First, let me say that Andrew is currently down playing his PS2 game again – but today didn’t go as well as yesterday. He came down with some hives. They were quite painful as they came on. He was in pain from the antibodies and then started to feel the burning as the hives broke out. The pain medication cannot help the burning. His eyes looked to me for help as he screamed in pain – and I could not relieve it. They gave him benedryl, which I believed helped the hives to settle down, and also put him to sleep. When they wanted to take his blood pressure, I asked that they wait; I didn’t want him to have to wake up.
He wasn’t resting too peacefully as it was. I could see his brow was furrowed, and his heart rate was high. When he did wake up, it was to throw up. This happened a few more times. Finally he wanted to leave. His blood pressure was up slightly, but that doesn’t surprise me since he was throwing up.
I’m not sure if it was the fresh air, or the promise I made him that we could go to Toys R Us when he felt better, but so far, he seems to have recovered from our morning. Now, I’ve been told the President is in NY and speaking this evening here in Manhattan – so I know what that will do to traffic! I think our next visit I’ll make sure the Dalai and George are not in town!
My small devotional book talked about blessings today and all that God has given us. I have so many blessings in my life! Ang
Sunday, September 21, 2003 7:13 PM CDT
Dropped Ang and Andrew off at the airport for a 7:35 am flight to NYC. First time they had to fly into JFK. She called later and everything went well and the weather is good. Andrew starts two weeks of antibodies in the morning again. Still looking for HAMA. I will join them next weekend and return on Oct. 3. Looks like the Twins will play the Yankees in the first round of the MLB playoffs. From previous visits Dr. K, our oncologist, sounds like a die hard Yankees fan. Andrew packed his Homer Hanky just in case. Dad
Friday, September 5, 2003 1:28 PM CDT
Okay, it’s been over a month – a GREAT month – since I’ve updated the website. Our August was packed with summer activities (just like everyone else’s!) We had three soccer players this summer – on three different teams! Whether I was watching my 13 year old scoring a goal, my 11 year old running with her long legs, or my 8 year old running (not quite as fast as the other boys on his team), it was all wonderful! Emily and Andrew both took swimming lessons for two weeks and had a blast. The five of us went to Valley Fair and had a super day (Nick won 2 HUGE stuffed animals at the arcade – every mother’s nightmare, “Where are you going to keep those?!”) The kids spent an afternoon with their summer babysitter at a place called Grand Slam and played laser tag – which they talked about for two days. It made me feel so good to know they had so much fun! Nick and Emily are both playing fall hockey leagues and Andrew has been asking, “When can I start hockey?” (His hockey clinic starts September 6th.) We spent a day at the State Fair, have done our school shopping, had haircuts, dentist appointments and school open houses.
And now everyone is back at school! Em started Middle school (my baby girl!) and now rides the bus with Nick (who wouldn’t promise me he’d be nice – only that he wouldn’t be mean! Big Brothers!!) And Andrew started 3rd grade. Andrew was a bit apprehensive the night before school started. Mrs. Allen was a very special 2nd grade teacher, but his new class has many familiar friends, and once he got home on Tuesday, everything was fine. Academically, he wasn’t much behind (we worked on as much as we could at home or in NY), but I believe third grade they really have a lot to learn.
We had a bit of a rough night Tuesday (early Wednesday a.m.) Andrew was up in the night throwing up again. My heart sinks every time. That little boy has thrown up more than anyone should ever have to in life. And our minds start to race – why? What’s wrong? What caused it now? We’ll never know. What we do know is we’ve come a long way in one year, but his little body is still healing. It hasn’t been a year since his surgery to remove the tumor. It hasn’t been a year since his stem cell transplant (when I re-read those journal entries, I know how far we have come!) So, we move forward, with small milestones like the first day of a new school year. He’s currently on his sixth (and hopefully last) cycle of Accutane. It’s the five big pills he has to swallow each day. They cause very dry skin (and maybe some nausea?) The idea is that they cause cells to mature. If there would be any cancer cells in his body (cancer cells do not mature, they just multiply) the Accutane should be making the cells mature, rather than multiply.
We head to New York again on September 21st for our next round of antibody therapy. Maybe this time his body will create it’s own little antibodies? We go because we have decided it is the best treatment for Andrew, but it’s never easy leaving Nick, Emily and Tom, and it’s not easy knowing that Andrew will be in pain.
For some reason, the cost of the flights to LaGuardia has jumped, so Tom is sending us through JFK – a new airport, a new adventure. I’ll try to keep better journal entries while we are away.
Keep praying – for us – for someone else – or to tell God thank you for something he has given to you.
Ang
Friday, August 1, 2003 10:32 AM CDT
Below is the E-mail of "Great News" from our oncologist in New York. Still gives me chills to get positive results. What a relief.
Bone marrow studies (7/28) on Andrew K. showed no evidence of neuroblastoma.
So happy...
So it’s definitely time for the Karp family to celebrate the journey we have made in the last year!!
Friday night August 8th our family is going to be part of the Relay for Life in Champlin. Last year was the first time I was ever aware of what Relay for Life is all about. A group (set in motion by one of Andrew's 1st grade friends) came together and sponsored a team called "Awesome Andrew."
Andrew was sick from his chemo that night, so I was there for just a bit, but it was really a beautiful sight! The event is held at the Champlin Park High School (where Andrew will one day attend!) They line the entire track (and then some!) with the luminaries. Each luminary cost someone $10 and has the name of someone they want to honor, remember, or support because of their fight with cancer. All money raised goes to the American Cancer Society.
Unfortunately, everyone reading this knows of someone with cancer. So please, be a part of Relay for Life. You can come and enjoy the evening or buy a luminary to honor or remember or support someone you know and love that has had this battle.
Our family will be buying luminaries to:
Honor Andrew, my dad Jerry Millard and Tom’s dad Stan Karp
Remember Tom’s sister Sara Call
Support my friend and co-worker Mary Kelly
Children we have met here in Minneapolis and New York.
All the others that have touched our lives at work, school and home.
Please continue to pray for Andrew!
Wednesday, July 30, 2003 4:12 PM CDT
Wednesday July 30th
The remainder of our New York visit went well. Andrew’s tummy was pretty good, his blood pressure remained normal and one other hopeful thing…there was very little pain when Andrew received his antibodies on Thursday and Friday. When his body is creating it’s own antibodies (or he gets what’s referred to as a HAMA) there is no pain when the antibodies are administered. Maybe…? We will send a blood sample to New York on August 7th to be tested.
In the mean time, the CAT Scan and MIBG Scan both came back perfect!! We had the Bone Marrow test on the 28th, so we are still waiting for those results.
We had a wonderful weekend and pretended we were regular “tourists.” Saturday we took the ferry to Liberty Island and saw the Statue of Liberty (as close as allowed since 9/11) and then spent some time on Ellis Island. She (Lady Liberty) is very beautiful and the history at Ellis Island was unbelievable!
Sunday we came across a street fair that ran for 10 blocks on Broadway. Everything you really don’t need – but at an incredible price so you buy it! We all three had fun! Then, we saw “Beauty and the Beast.” Before hand, Andrew was asking me “about the movie” and I explained that it wasn’t a movie – but live people on a stage. I watched his face during the performance – he laughed and enjoyed the show – almost as much as I did it was spectacular.
We got home about 10:30 pm Monday night. Andrew’s tummy is still a bit sensitive, so he still getting some anti-nausea medicine and he’s going back on the appetite stimulant since he’s lost a few pounds. But he came through the two weeks so much better than our May visit! Thank you again for all your prayers!
Now our family should be home for almost eight weeks. I’m looking forward to having a few family meals together when our soccer schedule allows (all three are playing. Andrew’s first game is this Friday.)
I wanted to mention to anyone who is interested, the Champlin Relay for Life is Friday night August 8th. Our family will be part of the Awesome Andrew team (put together by Lisa Stordahl and Ann Sievers). If anyone wants to buy a luminary, to honor someone or in memory of someone, they are $10 and you can let me or Tom know. (My family will also have some of the forms to purchase a luminary.) If you are interested in coming to the Relay, it is something very special and fun! I had never been to one until last year. It is unfortunate that cancer has touched so many families, but seeing all the luminaries glowing in the dark, and especially the ones spelling the word “HOPE,” it really touches your heart. Come for just a while, or come for the entire night! We can all have fun together!
Wednesday, July 23, 2003 4:55 PM CDT
Wednesday about 3:00 p.m.
As we sit here waiting for Tom to arrive, I wanted to get a journal entry ready for the website. Andrew has finished up three days so far this week – with NO PROBLEMS!!
He hasn’t thrown up since last Friday and his blood pressure has been great. (He’s currently working on some bagel bites and a big glass of whole milk.)
So, for those of you who when you’ve read my journal entries have felt like you’ve been listening to your pastor, or for those of you who just sort of believe but have never seen the real power of prayer – this week we’ve all been part of something special!
We continue to give several anti-nausea meds, and they certainly seem to be working. Receiving the antibodies has still been painful, and so he receives pain medication, but for the most part, once that wears off, he has been quite comfortable.
Our CAT scan and MIBG scan went fine – we just wait for results on those now. We’ll spend an extra weekend and Monday with this trip, since his bone marrow biopsy is not scheduled until Monday the 28th. (I’m so glad Tom could come!) The two big kids will spend a couple days with my folks and then are going to have a fun weekend going up north with my sister Becky and her family. They are having their annual weekend with good friends who have included Nick and Emily this year (water skiing, wave runner, etc. – what every 11 and 13 year can’t get enough of!)
Thank you for your continued prayers – my Little Bear’s eyes have been so sparkly blue this week!
Ang
Monday, July 21, 2003 8:26 AM CDT
It’s Sunday night about 7:00 p.m.
With my last journal entry I asked for a lot of prayers to make Andrew feel better. IT WORKED!!!
Friday was a long day again – and his blood pressure hit it’s highest point in the week (155/104 and that was before the antibody treatment!) They gave him nifedipene under his tongue and then within 15 minutes were able to start his antibodies. He only threw up once Friday morning. I spent the evening and during the night giving anti-nausea drugs on a regular schedule. He mostly just slept. As of Friday evening, he hadn’t eaten since Tuesday.
But he woke up Saturday feeling pretty good! (It helped that he got to wake up on his own time clock!) We took our morning pretty slow and just kept up the anti-nausea meds. Andrew spent some time playing the PS2 game in the playroom. I was about to make myself some lunch and he told me he wanted Subway for lunch! I thought I would fall over (besides the fact it sounded really good to me.) So we started towards Subway. About half way there he had a big sigh and said, “I didn’t realize it was so far away.” (It’s about 5 short blocks) So we sat down for a moment in the shade, and then continued on – with no problems. When we got back he actually ate about a quarter of the kids sandwich!! And then – we headed off to Times Square to (bet you can’t guess?!) Toys-R-Us!! We made a purchase (I can’t tell because he wants to surprise his dad on Wednesday) and then proceeded to walk part way back to Ronald McDonald House before catching a taxi. (We miss GPS Tom, I don’t read the bus and subway schedules very well. My family will tell you I am directionally challenged). On the way, he ate almost an entire Rainbow Popsicle (and wore the various colors on his shirt as it melted). His lips were stained but smiling as big as could be! When Andrew asked me what I wanted for my treat for the day (since he got something at Toys-R-Us) I said my treat was a little boy who felt so good!
Saturday night there was a carnival and pizza here at RMH – my small boy ate pizza and had a ton of fun with the other kids.
Today was just as good! Our big adventure was walking from RMH to the Museum of Natural History to see the new Ocean exhibit. It’s quite a ways, but a good portion was through Central Park and Andrew suggested we walk all the way. It was really fun! We saw a pond with remote control sailboats (just like in the Stuart Little movie) and we saw a huge fountain and people in rowboats on a lake (Andrew saw some people kissing!) Central Park is just like you see in movies! We found the same Rainbow Popsicle, but did a better job keeping it off his shirt! Now we’re headed to KFC for some chicken.
I don’t know what the week will bring…but our weekend was absolutely wonderful!! (Remember – with God all things are possible!)
Tomorrow our morning will begin with a CT scan before the antibodies. The tough part with that will be the fact he has to drink a bunch of stuff 1 hour before the scan that is scheduled for 8:20.
Thank you everyone for your prayers!!
Ang and Andrew
Monday, July 21, 2003 8:26 AM CDT
It’s Sunday night about 7:00 p.m.
With my last journal entry I asked for a lot of prayers to make Andrew feel better. IT WORKED!!!
Friday was a long day again – and his blood pressure hit it’s highest point in the week (155/104 and that was before the antibody treatment!) They gave him nifedipene under his tongue and then within 15 minutes were able to start his antibodies. He only threw up once Friday morning. I spent the evening and during the night giving anti-nausea drugs on a regular schedule. He mostly just slept. As of Friday evening, he hadn’t eaten since Tuesday.
But he woke up Saturday feeling pretty good! (It helped that he got to wake up on his own time clock!) We took our morning pretty slow and just kept up the anti-nausea meds. Andrew spent some time playing the PS2 game in the playroom. I was about to make myself some lunch and he told me he wanted Subway for lunch! I thought I would fall over (besides the fact it sounded really good to me.) So we started towards Subway. About half way there he had a big sigh and said, “I didn’t realize it was so far away.” (It’s about 5 short blocks) So we sat down for a moment in the shade, and then continued on – with no problems. When we got back he actually ate about a quarter of the kids sandwich!! And then – we headed off to Times Square to (bet you can’t guess?!) Toys-R-Us!! We made a purchase (I can’t tell because he wants to surprise his dad on Wednesday) and then proceeded to walk part way back to Ronald McDonald House before catching a taxi. (We miss GPS Tom, I don’t read the bus and subway schedules very well. My family will tell you I am directionally challenged). On the way, he ate almost an entire Rainbow Popsicle (and wore the various colors on his shirt as it melted). His lips were stained but smiling as big as could be! When Andrew asked me what I wanted for my treat for the day (since he got something at Toys-R-Us) I said my treat was a little boy who felt so good!
Saturday night there was a carnival and pizza here at RMH – my small boy ate pizza and had a ton of fun with the other kids.
Today was just as good! Our big adventure was walking from RMH to the Museum of Natural History to see the new Ocean exhibit. It’s quite a ways, but a good portion was through Central Park and Andrew suggested we walk all the way. It was really fun! We saw a pond with remote control sailboats (just like in the Stuart Little movie) and we saw a huge fountain and people in rowboats on a lake (Andrew saw some people kissing!) Central Park is just like you see in movies! We found the same Rainbow Popsicle, but did a better job keeping it off his shirt! Now we’re headed to KFC for some chicken.
I don’t know what the week will bring…but our weekend was absolutely wonderful!! (Remember – with God all things are possible!)
Tomorrow our morning will begin with a CT scan before the antibodies. The tough part with that will be the fact he has to drink a bunch of stuff 1 hour before the scan that is scheduled for 8:20.
Thank you everyone for your prayers!!
Ang and Andrew
Saturday, July 19, 2003 9:14 AM CDT
Wow – where to begin?!
We left on July 5th for our family reunion, planned before Andrew was sick, to Jekyll Island, a small island off the southern coast of Georgia. What an incredible week we had! There were 27 of us – our family, my sister Becky and her family, four of my cousins, and their kids, and some aunts and uncles. The ocean is amazing! A walk along the beach is so relaxing or breathtaking if the tide is crashing in. The kids found so many treasures in the sand – different sorts than they find in our Minnesota lakes. Andrew saw the elusive loggerhead turtle, which was bigger than he is. Tom caught a 30-pound shark that was quite tasty! Nick and Tom can say the term “water hazard” has a new meaning – the alligator that followed them along the fifth hole when they went golfing! If we weren’t at the ocean, there was always the pool – which wasn’t far from the Tiki Bar! Nick won a limbo contest, and Emily basically had a “girls week” spending every waking hour with one of six other little girls! Andrew completely enjoyed his freedom with no catheter, but split his time between the pool and the game room.
We got back to the Minneapolis airport gate C13 about 8:30 p.m. on July 12th (A special Happy Birthday to someone – I haven’t yet sent you a card!!) On Sunday morning, July 13th Andrew and I caught a 10:26 flight to NYC from gate C12!!
It’s now Wednesday evening about 7:00 – and our wonderful trip seems so long ago. I want to ask upfront from anyone reading this, for lots of prayers for Andrew. Your prayers have helped to get him well, but he needs them for the next couple weeks to get through this round of antibodies. Our trip in May has left both of us a bit apprehensive. Today I feel like we’re edging toward something similar. His tummy had a rough morning, throwing up on the way to the hospital and continuing six more times before noon. Throwing up, along with receiving the antibodies, has started his blood pressure rising again. Right now he’s sleeping, which he’s done for a good portion of the evening. If you could think of Andrew and say a short prayer anytime during the day that his blood pressure stays down and his tummy stays calm – and that his little body creates the antibodies on his own so these trips will end – we would appreciate it! Next week Tom will be joining us on Wednesday – if you want to ask God for a bit of extra strength for me, I could use it too! (Starting Monday the 21st, Andrew will begin another round of tests – it’s been three months already since the last round of tests.)
Thursday now, just after 8:00 p.m. Yesterday ended very similar to how it began, with quite a bit of throwing up. I got him started on anti-nausea IV medication before he woke up this morning. It seemed to help some. He still threw up a couple times today, but not nearly as much as yesterday. The blood pressure continues to slowly creep up a bit higher each day. I cried this morning as I held Andrew’s head when he threw up and I listened to the small boy who shared our room screaming in pain. I know we come here to keep Andrew’s cancer away, but I don’t like it here. Right now Andrew is sleeping again – or rather – I feel he’s drugged into not throwing up.
I’ve never been completely sure what to tell Andrew when he asks why this has happened to him. My best explanation is that God thought he was strong enough to use him as a tool. There are so many people praying for him, and God likes people to pray. I guess this is the best reason I can think of and a reason that an 8 year old can understand. Each morning it gives me some strength and comfort to read a bit from my Bible. There are certain passages that I’m really clinging to this week:
Luke chapter 1 verse 37 says, “For nothing is impossible with God.” I pray for Andrew to get over these daily hurdles of throwing up and elevated blood pressure. But my prayers end each night with a plea that God will not let his cancer return.
Ang
Sunday, June 29, 2003 11:06 AM CDT
Clinic visit went well. The fever was down. Weight is up (62 lbs!). Blood pressure is very good. His face is puffy from the megase (appetite stimulant). He is cutting out the magase and halving the BP meds for now which is great. Started the accutane last Wed. so have to be careful in the sun. He played in his Little League game this weekend and had a wonderful time.
Special thanks to Lynn and Mike Richards for the air miles. That is a big help. Mom and Andrew are set for their next trip to NYC. Tom
Thursday, June 26, 2003 10:26 PM CDT
Home from vacation. We went on the long delayed vacation that was planned last summer. We had a cabin rented last year that we had to cancel. This week we finally went. It rained all week but we had fun anyway. Andrew loved the fishing. Lot’s of Sunnys and Perch off the dock. Grandma and Grandpa M came for a day and helped catch and clean fish. Andrew’s appetite has been strong.
One concern we have tonight is that he is running a fever. Sends a new concern. We will call the clinic tomorrow. Things can go so well you forget your walking a tight rope.
Kind of disappointing news on the next trip to NYC in terms of scheduling. They have to stay an extra weekend to fit in all the tests. Nothing gets easier but six months ago we would have done anything for the treatment he is receiving so we should not take these things as a hardship. If Frequent Flyer Angels are out there Ang and Andrew could use the help this next trip. Summer airfares to NYC have taken a hike unfortunately.
Haven’t written in awhile. Haven’t wanted to write. Haven’t NEEDED to write. Since my last entry on April 23 there is 20 lb. less of me. I spend less time on-line and more time taking care of myself. More focus has been on Andrew’s health and very little on my own this past year. Pulled a hamstring last week umpiring a little league game, which has slowed down my progress. Hope to be back to the workouts soon. Cancer parents need an outlet. Writing can be an outlet but if your health goes south (and that is common) there needs to be a balance. Tom
Thursday, June 12, 2003 12:38 AM CDT
June 12, 2002 we were delivered the news that Andrew had stage 4 Neuroblastoma.
June 12, 2003 we have a little boy who has fought courageously and been through more than most of us will ever have to endure, and now has no detectable cancer in his body.
Our family has not been through this alone; we have had support from all of you!
Yesterday, (one year after being told there was a “mass” and it “could be bad”), they removed the catheter from his chest. Andrew was very scared, and there were tears before the surgery. It upset him the most knowing there would be an IV in his hand when he woke up. It was a two-hour surgery. They removed the catheter (a tube that came out of his chest – used to administer meds and draw blood; it had to be covered all the time, kept dry, and as sterile as possible; we changed the dressing once a week – which wasn’t one of our favorite tasks) and put in a port. The port is about the size of a quarter, made from titanium and is completely under his skin about two inches from where his arm meets his body. The center has a soft part that will allow needles to get in.
As always, watching his little eyes close from the anesthesia made the tears run down my face. He was groggy when he came out, but ready to watch a Sponge Bob video and start eating pretzels. He was a bit sore and favored his arm. We got home around 7:00. After eating KFC, he wanted to go to Target to spend a gift certificate he got last month. “My legs don’t hurt Mom, just my arm.” Logic to an 8 year old – if it doesn’t hurt, why rest? (I think I would have liked to rest.) He picked out a Scooby-Doo beach towel and a Transformer and was quite please with his purchases.
He had Tylenol before bed, but couldn’t sleep on his side too well – it sort of pulled. He was concerned that he wouldn’t be able to get out of bed this morning. But when I left for work, he was up and already playing with his new transformer. He has his whole summer ahead of him, baseball, piano, vacations, swimming, soccer, sleepovers, bike riding, and reading (he has several books he told me he wants to get through) – with only two weeks interrupted by a trip to NY. (I will also keep him busy with his chore list! I’m the mean Mom you know!)
I found out the Champlin Relay for Life is August 8th. I’m going to get more details, but hope to have our whole family involved this year. Andrew’s friends were there last year in his honor but he couldn’t make it. I think he would have fun being involved. If anyone is interested in being part of it, let me know. There are, unfortunately, too many of us in the world who have been touched by cancer.
Have a wonderful summer – I know our family is planning on it!
Continue praying, keeping alert, and always thanking God. Colossians 4:2
Ang
Friday, May 30, 2003 3:23 PM CDT
We’ve been home two weeks now, and we’re back to the closest we’ll be to “Normal” at our house. Andrew spent most of his time last week throwing up and taking medicine.
Memorial Day was our “turn around” day. Although the morning started out slow, Andrew got a last minute invitation to a birthday party for his buddy Cole who lives 3 doors down the street. The party started at 12:00 and Andrew didn’t think he was up to going (he’d thrown up at 9:30). By 1:00 he decided to go for a while. He came home briefly between 1:00 and 2:00 to get his swimsuit on – just to get “part way wet” he told me (his catheter in his chest can’t get wet). I never saw him again until 5:00. He showed me his party “loot,” informed me of what he ate (a cheese and ketchup sandwich and ice cream cake) and headed back down to play with Cole some more. When he came home later he ate a bacon and ketchup sandwich. I know, it doesn’t seem to be well-rounded nutrition but since it had been more than two weeks since he’d eaten much of anything, I was pleased he was interested in food.
He wasn’t sure about going to school the 27th, since he still hadn’t gone 24 hours without throwing up. So he spent the day with our friend Nancy. I called to check on him at one point. They had been grocery shopping and were trying to fill a water-balloon! He was better – I could just tell. There were still dark circles under his eyes, but the sparkle was back!
Wednesday the 28th we had another doctor visit. The blood pressure is back to normal (though he’s still on medicine), the weight is still down (but we’ll work on that now that he’s eating), but the best news was that we don’t even have to go back to Children’s until June 11th! So, the plans right now, are that Andrew should be at school each and every day from now until the end of the school year, including a field trip to the zoo!
June 11th will be a big day at our house. Not only will we get Andrew’s catheter out, it will be one year to the day we found out Andrew was sick.
What a year it has been…We will continue to have trips to New York for antibody treatments and tests, and we will continue to hope and pray that the worst is behind us and the cancer will not return. We continue to heal as a family physically, emotionally and mentally, because this year has taken a toll on all of us in some way. And we continue to be thankful for the blessings that we have. We have so many friends, family, co-workers, people in our community, people from our church, and people who we’ve never even met, who have supported us and helped us get through this year. Once again I want to say thank you for all you have done for our family. The prayers, kindness, generosity, patience and love you have all shared with our family have touched us deeply.
Ang
Sunday, May 18, 2003 8:19 PM CDT
We’re home now. We got home about 10:00 Friday night. By 10:20 I had Andrew hooked up to IV nutrition. As I crawled into bed Friday night, I was so happy to hear the bugs outside (no horns or sirens) and see the moon through the window (no tall buildings). Saturday morning I heard the birds and checked on my perennials with bare feet in the cool wet grass and still in my pajamas. It was so good to be home!
Thursday and Friday continued along the same lines as it had since my last entry (Wednesday). Andrew’s blood pressure was high, they gave him something to make it go down short term, he got the antibodies, some hives, and his blood pressure went back up. He was still nauseated, but not as much and tried a few bites of food. Friday afternoon was tough. It seemed to me each time they took Andrew’s BP it was higher than the time before. He wanted to make sure he could get out of the clinic so we could catch our flight – but he was very anxious. Nothing happens very fast around there. I finally asked to talk to the doctor (usually, most contact with the doctor is through the nurses). I just told her that being at the hospital and having his BP taken over and over and fearing he couldn’t go home today (Friday) was adding to his elevated BP. Her concern was whether traveling would be safe, as well as if in fact his pressure went down (with all the meds) if it would be too low. I promised her we would have a home nurse visit both Saturday and Sunday and told her we already had a Monday morning appointment at the clinic. They gave him one last dose of Nifedipine (to quickly lower the pressure) and within 15 minutes, we were on our way out the door. Thank goodness my dad was there. He had gone ahead of us and finished the packing, got all the cleaning done, checked us out and loaded the bags in the cab to head to the airport. Andrew and I parked his wheel chair at the RMH and got in the cab. (I do believe if they had taken my BP that afternoon I would have been very close to the same as Andrew’s. My dad bought me a beer on the plane ride home!)
Saturday Andrew wasn’t feeling too well, and began vomiting again. We had hoped he would have been able to get to his baseball team pictures, but I told him not to worry, I can just take my camera to one of his games. At one point in the day he was outside hitting a few golf balls, but ended up back by his bucket. My parents came to help “dig in” to the laundry and other stuff around the house and yard. Saturday night Andrew wanted pizza but that didn’t stay down. Today (Sunday) has been about the same. He’s thrown up a few times and completely lacks any energy. He’s spent most of the day on the couch and just wants me to tickle his back. As I promised the doctor, we’ve had a home nurse visit yesterday and today. The pressure hasn’t come down much, and the “on call” doctor ordered another dose of the nifedipine this afternoon.
I’m mentally and physically exhausted and found myself “snapping” at just about everyone today. I took Andrew to NY as a strong boy. THEY (the doctors and nurses in NY) managed to beat him back down to a sick boy because WE (Ang and Tom) want him to have the antibodies. Now, we have to get him well and strong again. We ask so much of this boy…we have chosen to put him through so much, and just hope and pray it is the right thing.
The protocol now gives him a break of two months between treatments. We will not return to NY now until the middle of July. In the mean time, Nick and Emily both have birthdays this week (Nick becomes a teen! UGH!), Nick and Andrew both have baseball and golf, there are some school fieldtrips, Nick has confirmation camp, Emily is taking some fun classes, we have two family vacations planned, and Em and Andrew will take piano lessons. We keep going, because that is what is normal. And if something gets missed, it’s not such a big deal any more. And each night when I put Andrew in bed, we try to think of something good in our day. I think everyone should be able to think of good things each night, maybe sometimes things we take for granted.
We continue to say thanks for all of the people who keep us in their prayers.
Wednesday, May 14, 2003 9:53 PM CDT
Tuesday started about the same as Monday – vomiting and high blood pressure. My dad arrived by 2:00. I was glad he was there – it was a very frustrating day. The nurse practitioner was not giving me the answers I wanted. I would be willing to bet she was thinking I was a real pain – not an advocate for my child. I wanted Andrew to get nutrition via IV. It’s not something they do here as easily as we do at home. I just know if a normal person didn’t eat for over a week they couldn’t do a full day’s work. I don’t know how they expect Andrew’s little body to work at getting better without any nutrition. It’s a “Mom thing.” I need to feed my child! The nurse was also not giving me answers about how we were going to resolve the high blood pressure issue. So I called Sara – our nurse in Minnesota. (This morning Sara, Dr. Bostrom and I had a conference call. Dr. Bostrom will order the IV nutrition to be delivered to our house Friday so I can hook him up Friday when we get home.)
I went for a walk last night. I just had to get out (thank goodness for my dad!) I realized how much I miss my little boy. He always holds my hand when we walk in New York. (It’s a wonderful feeling having that little hand in mine.) I found a quarter on the sidewalk. Andrew and I have a little game that we are collecting all the money we find in NY in a baggie. Usually we just find pennies. Then I saw a red “slug-a-bug” – another one of our games. And the dogs – Andrew loves looking at all the dogs here. It made me sad. I went to bed with a headache.
This morning, the blood pressure was higher than ever (155/110 at one point). The plan is to increase his current medication for the next few days. To get the pressure down immediately he had a medication that goes under the tongue. I have no idea how to spell it or say it, but it worked. Unfortunately it lasts only for the day. The pain from the antibodies seemed a bit less today and there were just a few hives. When Andrew decided it was time to go, he walked back to the RMH with a stop at Blockbuster. In all of our days of receiving antibodies, he has NEVER walked back to RMH. Always the wheelchair. He even held my hand as we walked back! He had big ideas of going to Toys R Us or FAO, but I think the energy level sank quicker than he expected (no food now for 8 days). After his video he sank slowly back into his bed for the evening. There is still nausea, but less.
It was a better day. Sara and Dr. Bostrom relieved some of my worries and I had a little glimpse of the boy I brought to NY and we’re one day closer to coming home.
Thank you for your prayers. They are helping.
Monday, May 12, 2003 8:03 PM CDT
It’s Sunday evening just after 6:00. This Mother’s Day has been a bit different than other years.
Tom, Nick and Emily left just before 10:00 this morning. (With all the fog here, their flight was delayed a few hours, but they are now in Minneapolis). I was so glad they were here this morning, and so sad when they left. I cried, then made a list a mile long of things to do to keep me busy. Andrew had given me a pink notepad for a Mother’s Day gift, because he knows I make a lot of lists – and he never lets me cry for very long.
My last entry was Thursday evening. Friday went quite smoothly – no GM-CSF – and no hives. The pain seemed minimal, which was a welcome relief. But Andrew was still wiped out and so we just rented some videos and the boys got PS2 games. We rented the 1969 version of “The Out of Towners.” It’s one of Tom’s favorites (it was good to see him laugh so hard!) Nick had a good laugh too – I think he has his dad’s sense of humor. As the evening progressed, Andrew did a bit more throwing up.
We weren’t sure what Saturday would bring…but Andrew seemed ready to explore! We took off for Pier 86, the Circle Line Tour and the Intrepid Museum. We signed up for the two-hour harbor tour around Manhattan. Andrew even wanted an ice cream sandwich (he hadn’t eaten anything since Wednesday, so I was willing to get him whatever he wanted.) Things went well for about the first hour – but went downhill fast after that. After the tour, Andrew threw up. Tom and the big kids went to the Intrepid (it’s an air/sea/space museum on an aircraft carrier). Andrew and I took a cab back to RMH. I was sad. I wanted the five of us to be able to have a fun day. There were things I wanted to explore. I just wanted Andrew to feel better!
After 3 hours at the Intrepid, the gang headed to China Town for shopping! They got back about 8:00, with all their “wares,” completely exhausted and bubbling with stories! Andrew spent the afternoon sleeping and throwing up.
So this morning, Nick and Emily gave me a really neat red purse (from China Town) and Tom brought me flowers and a cup of coffee. I spent the day working on my list. Andrew spent the day sleeping and throwing up. When my mom called me today I cried. Right now, I wish I had some chocolate (there are no vending machines at RMH). On Wednesday my dad is coming to help Andrew and me get back home. Right now Wednesday seems a long way away.
Maybe Andrew will have a better week.
Monday now about 6:00. The little boy on the bed beside me looks really wiped out. He’s lost nearly 8 pounds in the last eight days. (Good thing his new shorts have a drawstring in addition to the button – but even his little hands seem smaller…) He hasn’t thrown up since about 10:00 this morning – which I am looking at as a small victory in our day! Receiving his antibodies today went fine. The pain was manageable. Right now the biggest issue is the nausea and vomiting. They sent us back to RMH on IV fluids and more anti nausea meds.
I talked with our nurse Sara and Dr. Bostrom in Minnesota today. It makes me feel better to get their thoughts on what’s going on with Andrew’s little body. New York is the right place when it comes to treating Neuroblastoma – but Sara and Dr. Bostrom treat Andrew – not just the disease Andrew is fighting.
I just talked with my parents and my dad is flying out tomorrow (Tuesday) instead of Wednesday! The clouds have cleared in the last 45 minutes, and I bought chocolate today. I prayed this morning that God’s angels would take extra care of Andrew today. I thought about big, soft wings cradling him to make him feel better. Maybe that’s a bit goofy or maybe it was more to make me feel better? I just want my little bear to feel better.
Friday, May 9, 2003 3:46 AM CDT
When I wrote my entry on Monday, Andrew was sleeping. It’s now Thursday, about 5:00 p.m., and he’s resting again. Since Monday, we’ve had two not so good days and one not so bad day. Today was not so good.
Tuesday, an odd thing happened. Andrew broke out in hives – before he even received his antibodies (Our first trip to NY he had incredible hives from the antibodies). It was, as the doctor put it, “An impressive case.” It delayed our receiving the antibodies for a few hours, but they went ahead. They thought it might be that he had developed a reaction to the GM-CSF that he gets before the antibodies. (It’s supposed to stimulate the white blood cell growth to aid the antibodies in their attacks.) His legs were the worst – welt upon welt. By the afternoon he also had problems with some vomiting. They gave him a different drug IV, adavan, (sp?) that did stop the vomiting, but put him out like a light. Andrew’s roommate Michael had a rough day as well. Because of his medicine and pain, he did a lot of yelling and screaming – mostly at his mom. This also caused his little brother to start crying, and all of this, sort of upset Andrew. At one point Andrew was yelling at me. I had to leave the room. Shortly there after, Nick was almost in tears as well. This is not a happy place. There are many very sick children. I told Tom I do not want to stay where the Make-A-Wish people want us to stay. It’s a hotel for sick children. When we are at home we are striving to not be sick and have a normal family. I do not want to go on vacation and be reminded of what we have been through or may be through in the future.
Tuesday night, Andrew just needed to stay in and rest again, but Tom and Nick took advantage of two tickets to Cirque du Soleil from the RMH. It’s a drama and acrobatics. I asked Nick if there was a story – he said he thought so – but he wasn’t sure because it might have been in French or something. A little culture doesn’t hurt now and then. He is missing a whole week of school!
Wednesday was a great day! There were hardly any hives from the GM-CSF?! The pain was manageable and we left the hospital between 3 and 4. Andrew came back to the RMH and went straight to the game room with Nick and Emily. (They are like puppies – always nipping at each other and yelping, but hanging close and enjoying each other’s company.)
Tom has a "guy" here at RMH that he sees for free tickets to events. I think his name is Juan Guzman (no really). So, we took four tickets and went to Shea Stadium to see the Mets play the Dodgers! “GPS Tom” had us take the subway (the #7 goes right to Shea!) What a beautiful night! We bought a 5th ticket, but the guy who seated us in the Club Level (very spendy tickets) told Tom to just stay there. (There were plenty of empty seats at Shea.) Tom struck up a conversation with a guy that turns out to be a former Minnesota Twin from the 1970's, Jerry Terrall (Sp?). Seems he is an advance scout for the Montreal Expos. We didn't stay late (5th inning) but we all had fun.
I guess I figured Thursday would go as well as Wednesday. I was wrong. Within an hour after Andrew got his GM-CSF, the hives started. If you multiplied Tuesday’s hives by three, that was today. This was all over his body. His hands were bright red and swollen; his little ears bright pink. At one point when I looked at his legs it was so strange. They were completely red (all the red spots had come together) with only a few small spots of white. The doctor was in quite early and it was decided there would be no antibodies given today. There are several issues that go along with the hives that we see – first, the hives we can’t see. It is very possible that the hives are on the inside, which could cause trouble with his breathing. And, his blood pressure went up again as well. They gave him several drugs to try and “tame” the hives. The combination caused him to be very twitchy. I’ve seen that happen to Andrew before. By 3:00 today, things seemed to have calmed down. Most of the hives had faded. As we were getting ready to leave, Andrew threw up. He has continued with that for the last few hours. (It’s now after 9:00 p.m.) We were able to quickly get a prescription for oral adavan but it does not seem to work as well as the IV. Throwing up is how his little body tends to react when it has had enough!
From now on, the doctor said, no more GM-CSF. That is a bit concerning for Tom and me. It’s part of the protocol because it works. There are other children that do not receive it – because of other reactions. But it leaves us wondering if he’ll be missing something that he needs? Another concern is that his white blood cell count has been dropping each day. The opposite should be happening with the GM-CSF.
Tom took the big kids to the Museum of Natural History this afternoon. The day was getting quite long again at the hospital. Dad stayed with Andrew tonight while I took Nick and Em to a little Mexican restaurant for supper. It was nice to spend time with them. Maybe tomorrow will be a good day again. Andrew wants to take the kids to one of his favorite pizza places!
Please keep praying – for Andrew, Nick, Emily, Tom and me. It’s been a bit tough this week.
Tuesday, May 6, 2003 5:40 AM CDT
Ang here – It’s Monday May 5th about 7:00 p.m. – and we’re all five here in New York!
Tom, Nick and Emily are out and about (they were talking about Times Square). Andrew is sleeping quite soundly. Today was the first day of round 4 of his antibodies. The first day back is always a bit tough. He had plenty of pain medication, threw up once, but is very sleepy this evening. I think our last few days have sort of caught up. Let me fill you in…
After a busy week (School each day and baseball practice on Wednesday, piano on Thursday and baseball practice again Friday) Andrew was up late Friday night. He had a couple buddies at the house. He came up from the basement at one point and said, “Can me and the guys have some Bagel Bites?” (not correct grammar, but Tom and I were smiling because he was playing with “the guys.”) Saturday morning was his golf lesson (last summer he had only one lesson before “everything started”), and Saturday afternoon was his first baseball game!
As Tom tells it – he went “1 for 3.” But, his second at bat was quite the line drive (there were tears under my sunglasses). Unfortunately, he wasn’t running too fast (the insuflon in his leg for his shots bothers just enough he doesn’t move too fast) and he was out at first. His smile to me on his way to the dug out showed me it felt really good to hit that! On his final at bat he got a single up the middle, and with the next few batters made it around and scored. Again my tears came. Andrew looked at me on his way to the dugout and then proceeded to come to the bleachers and give me a big hug. I know this wasn’t a major league player just scoring the winning run at the World Series – but I thought about all this little boy has been through in the past year and I was so happy he could be doing just like the other little boys.
Saturday night was Em’s dance recital, a trip to Dairy Queen, and dropping off Molly (our dog) at the neighbor’s. It was too late again when he went to bed, and we were all up early for our Sunday flight. After we checked in here at Ronald McDonald, we were off! We headed to Battery Park hoping to go to Liberty Island. The last tour boat had already left. So we just wandered in the oceanside park – there are vendors everywhere – had ice cream and enjoyed the sun. We came upon the South Street Seaport (huge pier and shops) and a big Cinco de Mayo Festival. Everyone was exhausted by the time we got back, and the TV was on too late (I am truly getting “soft” with what I seem to allow – I’m supposed to be the Mean Strict Mom!)
So, we’ve taken Nick and Emily out of school for the week (Tom and the kids will return to Mpls on 5/11). They are both excellent students and there’s still about a month of school left. Family time is important (but more than once in the last 24 hours I have prayed for patience!)
I know our trips (especially in April) sound “fun filled” but it’s really only the evenings that have activity. We actually spend most of our day at the hospital. Today was 8:00 am to 5:30 pm. I think Nick and Emily didn’t really realize that. They spent some time in the morning working on homework and then wanted to know when we were leaving. At that point, I don’t think we had even started the antibodies.
I believe Tom has mentioned the hospital rooms here are small and shared with another patient. So adding two more kids makes things even closer. I think too, Andrew and I have our “routine.” It will be a challenging week, but I’m glad the big kids are here. The better Andrew is doing, the harder it is to come here where there are so many sick children.
Wednesday, April 23, 2003 10:09 PM CDT
All tests are back now and all negative again! Pray for continued good news as we continue to test over the months and years.
Spring break is done. Kids reluctantly rolled out of bed on Tuesday after having a week off. Andrew is doing well. Had his first baseball practice last night. He heads back to NYC for the fourth round of anti-bodies on May 4th. This time I have to think we can skip the bone marrow at the end of the two weeks. Poor guy has had that test every time he goes to NY. He is so much stronger after this round that it seems like old times. He has much of the spunk back. Still moving slowly but that will come. Taking the accutane, which continues to dry him out. I will get new pictures on his site soon.
We will take a blood draw in the morning and FedEx it to NYC for tests. They check to see if he has HAMA. If he does get HAMA that delays the next treatment but that is a good thing. Means the antibodies are working.
Making plans for the summer. Booked four days at a small resort in Northern MN. It's the same place we had booked for last summer but had to cancel when everything was on hold.
Chuck Weber passed away on April 15. I won’t eulogize other than to say…if you ever have a chance to be a coach, be a Scout leader/assistant or just take time to do whatever interests your kids, your kids will remember and appreciate it a lifetime. Tom
Friday, April 18, 2003 6:16 PM CDT
Before I forget – the CAT Scan and Bone Marrow tests came back normal (yea!) We are waiting for the results of the MIBG test we had Wednesday and Thursday here in Minneapolis.
We’ve had a great week at home. (I don’t like to think about the fact that we turn around and leave again in two.) It’s been a busy week requiring four trips to Children’s for the MIBG Scan (two to prepare for the scan and two days of scanning). The kids are home on spring break, so Andrew hasn’t had to miss school. He started round two of accutane (big pills) this past Monday. I was at work and the kids were getting ready to go to the neighbors’ when Andrew “lost” his breakfast in the family room. It took some coaxing from me on the phone, but Nick was able to take care of the mess. We all have to do things we never thought we could…
Today is Good Friday. The kids know that we sing my favorite song on Easter morning – “Jesus Christ is Risen Today.” It’s so beautiful when the brass plays along, the smell of the Easter Lilies, the thought of a “new beginning.” This Easter there will be extra song and praise in my heart! (And I better remember Kleenex because I’m sure my tears of joy will come out as well!) More than once Andrew has asked me why he had to get cancer. I tell him that I don’t know. But I do tell him that God is using him as a tool. That there are so many people praying for him and God loves people to pray! He can understand that. I guess for now, that’s the best I can do to explain this to myself as well. Andrew is so healthy now. My prayers are that the cancer will never return and that emotionally our whole family heals and accepts our “new normal” life.
Remember the power of prayer and the possibilities of miracles – not just on Easter, but every day! Angela
Friday, April 11, 2003 2:31 PM CDT
Completed the last anti-body treatment for cycle three today. We return in three weeks for cycle four. I packed up and cleaned the room (have to leave it better than you found it at RMDH). Catching the 7:10 pm flight out of LaGuardia. Yesturday we had a CAT scan and today he had the bone marrow test. We will do the MIBG at home otherwise we would have had to stay another day. That was not an option. Besides it will be nice to see our home doctors and nurses again. You do become attached to them.
Kids are on Spring Break next week and Andrew will start up with the next cycle of accutane on Monday. Before that if he feels up to it he can go to his first Little League tryouts tomorrow. He said today we wished it were inside in the Metrodome. Tom
Monday, April 7, 2003 7:08 PM CDT
I don’t know how Tom does journal entries day after day – I feel like I just did one and I realize that was four days ago!
Believe it or not, after our busy week, we stayed in on Friday night. We stopped at Blockbuster on the way home from the hospital and they had sub sandwiches here at RM House.
But, Saturday morning we were back at the “tourist” stuff. We headed to the Museum of Natural History. The museum is so big, we continue to see new things each time we visit. We also saw the IMAX show called Bears – and enjoyed it very much. After lunch we hopped on the subway and headed to China Town! (GPS Tom is amazing with the subway and bus system!) We had been there in January when my cousin was with us. It was very cold then and Andrew didn’t feel well. It was only somewhat cold on Saturday and Andrew felt great! He is definitely my shopper! He is drawn to every cool toy, just like I am drawn to jewelry and purses! And those are all things that are abundant in China Town! With only one stop at McDonald’s (fries to warm the guys, and coffee to warm me) we “closed the place down” and were making our last purchase as the stand we were at was closing its doors at 6:00. (It’s a secret – but Tom picked out something very cute for Emily!) Andrew’s two big purchases of the day – a $2 Pokemon t-shirt and an $8 Swiss Army watch. (Mrs. Allen – I insisted on a watch with numbers – now he is quite proficient with a clock!)
Sunday we had a late brunch at a nearby café that has better prices than Perkins – if you can believe that?! Then we hopped the bus to a large flea market on the west side of Central Park. It was freezing out but sunny! We just looked – no buying (hard concept for Andrew) and then headed over to the Central Park Zoo. It’s not big, but had some fun animals – penguins, sea lions, polar bears, an otter and a toasty warm indoor rainforest area! We all three were tired by the time we returned to the RMH!
So now, Monday - MORE SNOW and COLD!! Ugh! Andrew and I told Tom if he wanted to go out tonight, he was on his own – we’re staying in! The Twins were supposed to play the Yankees here for their season opener today – and it was cancelled!
Andrew’s day started slowly. He complained his tummy didn’t feel well before we got to the hospital. I think the daylight savings time change and the busy weekend was hard for him. By 10:00 he was doing well. The antibody treatment was about the same as last week. He was uncomfortable for a couple hours. No throwing up today, no hives and no residual pain – but right now it’s just after 7:00 p.m. and I realize he’s asleep on the bed snuggled under his little flannel blanket (made for him by my grandma just before Andrew was born).
We will have the CAT Scan on Wednesday, the MIBG Scan on Thursday and another Bone Marrow Biopsy on Friday. Each of those days he’ll have the antibodies as well – so I’m not sure we’ll be out and about too much more this week. It would be fine with me if we wait until it’s a bit warmer here in NY to continue our explorations! We’re hoping to bring Nick and Em again for a few days the next time we come. I miss them. All our sightseeing is a good diversion, but we’re here not because we came to have fun. And I am reminded of that each day when we go to the hospital. Andrew said to me last night, he’s looking forward to the day when we don’t have to have medicine every day and change the catheter dressing on his chest and get hooked up to IV’s and, and, and…
Another day done. Another day closer to the day Andrew is looking forward to…
Thursday, April 3, 2003 7:59 PM CST
Wow! What a couple of days we’ve had – pretty good ones I’d say.
Ang Again -
The treatments have been going well. The pain has been manageable with some vomiting Tuesday and Wednesday during the treatment. Today (Thursday) there was more pain, but no vomiting. Many of the children receiving antibodies seemed to have worse pain today. The biggest difference for Andrew this trip to NY is no residual pain in Andrew’s hands and feet. Previously that could go on for several hours after we returned to RM House. I think he is so much stronger this time we’re here since he had a few weeks to just “heal” when we were home. The nurse commented on how good he is. Our 3 weeks between round one and two were filled with radiation and we had just started to heal from the stem cell transplant before our first round. Because Andrew’s feeling better – we’ve been going “out and about” during our evenings.
Tuesday, I had to make a phone call to RSVP that Andrew couldn’t make it to a friend’s party. We called from Madison Square Garden! We got tickets from the RMH to the NIT Basketball Tournament and were able to go watch the Gophers!! Andrew talked to his friend Tucker and I’m sure Tucker couldn’t wait to share the information with Mrs. Allen’s class on Wednesday! (Side note to Mrs. Allen – I’ve been working math into many things we’ve been doing – like what was the difference in the scores between the Gophers and the Hoyas? It was double digits at that time – and he did it in his head!)
Wednesday was Andrew’s choice as to how we spent our evening. His choice – Toys R Us in Times Square!! (imagine THAT?!) Then we grabbed a late supper at TGI Fridays (We let Andrew add the bill and the tip) and took the bus home. (Andrew figured out how many blocks we’d have to walk to catch the bus. Our geography lesson came as we waited for the bus in front of Lehman Bros Financial Building – It had the names of cities from around the world so I quizzed him which countries or states they were in!)
Today is supposed to be my turn to “pick” our evening activity. It’s just after 4:00 P.M. and I’m making Andrew MORE Bagel Bites (Pepperoni of course) and he’s on his third glass of milk (he drinks a lot of whole milk – something nutritious!) If I get my way, I want to take a Carriage Ride around Central Park (it’s about 50 degrees) and see the Plaza Hotel. Emily and Nick saw that when they were here in January.
It’s 8:30 P.M. now – and we’re back. I got to see inside the Plaza and I got my carriage ride around Central Park. It was too late to visit the little zoo at the park – but we’ll have all weekend! One more day of antibodies to go this week – hooray!
Thanks for your continued thoughts and prayers – we’re doing well!
Monday, March 31, 2003 6:04 PM CST
Ang here - I guess it’s my turn to put together a journal entry again.
It’s Monday late afternoon. Andrew started antibody therapy again today. It went very well. There was only a small amount of discomfort. He doesn’t have any residual pain in his hands or feet today and no hives. Everyone here seems so happy to see his smiley little face – and a very thick head of hair!
Tom and Andrew and I arrived here in NY Sunday afternoon. The flight was pretty much uneventful – just some turbulence. It was a gray rainy day here. From the airport to the Ronald McDonald House I felt about like the weather, and a few tears slipped out. I know we are where we need to be for Andrew, but after almost four weeks of being home – I didn’t want to leave Minnesota. I wanted to keep my family all there together. My folks are watching Nick and Emily, so they are in good hands – just not mine.
When we got somewhat settled in yesterday, Tom suggested we go to the little pottery place down the street. They have all sorts of plaster statues and pottery to paint. I didn’t think Tom and Andrew would enjoy themselves – but Andrew was the last one done. He very meticulously painted a little brown dog with a black nose and pink tongue. I think it was a good relaxing time for all three of us! Then we went out for – you guessed it – pizza!
We found out today that Andrew will have to have scans and tests before we leave. I guess that happens every three months or so for now. I will push to make sure everything is completed before our currently scheduled departure (April 11). I don’t want them telling me we have to stay a few extra days. I feel like a mean “mother bear” sometimes.
I’ve decided today that I find it very depressing here. There are so many families and so many sad stories. I talked to a mom today and she said sort of the same thing – there always seems to be another family that has is worse. Again, I feel so fortunate that we have so much support and so many prayers from so many people. We've been through a lot - and most days I feel like we’ve held together pretty well. When I talk to families whose children have relapsed, it makes me scared for the future. I just want this to all end. It's like even though we've been able to send Andrew’s cancer into remission it has left a path of destruction. Neuroblastoma is nasty. It will continue to "haunt" us. We will wonder and worry for many years - not sure if it is still lurking in his body.
Andrew found a new Beanie Baby at the airport (like we need another one at our house) and its name is “Courage.” I told him it was the perfect little dog for him because he has so much courage.
Please continue to say a prayer for Andrew – and our family these next two weeks.
Sunday, March 23, 2003 9:09 PM CST
Spring
Andrew is doing quite well. I got his bike down today for him to ride. He had gotten his new "big boy" bike last Spring just before all of this. He proved today you never forget how… He was able to play outside much of the day with breaks in the house to rest. He has to be careful in the sun while taking accutane.
Dr. Bostrom warned mom that his skin would be extra sensitive to the sun. Our kids always did use a lot of sunscreen so it won’t be hard to keep up. His mouth is also sore as the accutane will dry him out and make his lips chapped. He has been getting Carmex and Chapstick on a regular basis.
Had his first sleep over this weekend. Andrew, Bret and Cole went to see a movie with mom and Em. Bret then got to sleep over at our house on Friday. Andrew had been asking about a sleep over for a long time. His older brother and sister have had many sleep overs. He was always too young. Mom had promised him when he was feeling better he could have a sleep over.
Andrew has been asking about the war. He is concerned about how close it is. Mom does a good job explaining it to him. Andrew doesn’t need extra worries. Mom trimmed his hair again today on the deck. The birds can use it for building a Spring nest.
Speaking of Spring the ladies are starting to call asking for our oldest son. I better answer the phone. Mom doesn’t need extra worries either. Tom
Wednesday, March 19, 2003 7:22 PM CST
Started accutane for the first time Monday. Didn’t go so well with the first few pills. I may be poorly informed but I believe this accutane is as important as any of the chemo treatments we had. The accutane is universally accepted as an important part of any protocol for this cancer. Andrew threw up the first set of pills. He has to take five pills a day for a total of 150 mg of accutane per day for 14 days. Seems to be going better today.
He had another clinic visit today. Ang said it was nice for him to see Dr. Bostrom and the gang. There is a nice familiarity. Ang could tell that Andrew was feeling great because he was Mr. Chatty Patty at the clinic. Ang could tell that he wanted to get to school after the clinic visit (he is back at school this week) because he didn’t have the separation anxiety when mom headed for work and grandpa took him to school. “Bye mom”. Andrew truly loves school. For the next week and a half he can be a 2nd grader again before the next round in NYC.
Aunt Becky gave Nick her acoustic guitar and he is starting to teach himself (thank God Aunt Becky didn’t play the accordion). I was hoping Nick’s next instrument would be the banjo. Can’t play a sad song on the banjo according to Steve Martin.
Emily had her hockey banquet Tuesday at a local restaurant. The girls and coaches did a great job this year.
Something happened Sunday that has not happened in a long time. Andrew’s buddy Cole came to the door and asked if Andrew could play! He told mom later he was happy to see Cole at the front door again. It has been a long time coming where he could come out to play. Partly the weather, mostly Andrew’s illness. Andrew was out running and jumping on the neighbor’s trampoline. He also said his legs hurt. Mom explained to him that this hurt was a good thing. Tom
Saturday, March 15, 2003 10:04 PM CST
The Ides of March
Andrew went ice fishing for the first time today. Uncle Phil took him out along with cousin Luke, Nick and I. It was 64 degrees on the lake and we drove mom’s van out on the ice. Ice is still over two feet thick. Lots of fresh air. Went to Rush Lake near Cambridge. We didn’t catch a lot but Andrew was packed and ready to go a day ahead of time once he found out we were going. Phil and Becky had given him an ice fishing pole and tackle for Christmas. He was excited.
Nick had his hockey banquet last night and the team gave a special honor to Andrew. We were blessed to have such a wonderful group of parents, coaches and players. Thanks.
By the way Andrew’s appetite is back! He is off the IV nutrients. He started with soup on Wednesday and by Friday he was eating with the best of them at the hockey banquet. Emily’s hockey team finished as the consolation champions this week. They were 4-1 in the District Playoffs and played very well. Mom was happy that she could help coach again.
We are still two weeks from the next NYC trip. We hope that Andrew continues to feel well enough to start the accutane on Monday. He has to take that for 14 days and it cannot overlap with the 3F8 therapy. The accutane will not be easy for Andrew because he hates pills. Most of what he takes has been IV but the accutane is an oral pill medication. We can mix it in food. I am sure he will find a way. Well off to bed. All the fishermen will sleep well tonight. Tom
Monday, March 10, 2003 6:54 AM CST
Had another journal entry on here last night. I took it down. Too negative.
Andrew walked out onto the ice Sunday to receive his medal for his ice hockey team. Ang cried when they announced his name at the arena. Next year we hope he can play. He enjoys the kids more than the game.
Andrew has not eaten since a week ago Wednesday. Very thin. Back on IV nutrients (TPN). Each day he seems a little better but the vomiting and dark circles under his eyes tell the story.
From a previous journal I had a prayer…it bears repeating.
This is the beginning of a new day
God has given me this day to use as I will
I can waste it or use it for good
What I do today is important because I’m exchanging
A day of my life for it
When tomorrow comes this day will be gone forever
Leaving something I have traded for it
I want it to be gain not loss; good not evil;
Success not failure, in order that I shall
Not regret the price I paid for it
Because the future is just a whole string of nows.
-Anon
No more, no less. Hug your kids. Call your parents. Tell them both you love them. Tom
Sunday, March 9, 2003 10:16 PM CST
Thursday, February 27, 2003 11:21 PM CST
This is the strangest life I've ever known.
-Jim Morrison, The Doors
One more day.
Andrew and mom come home tomorrow. He has a bone marrow test first thing in the morning. Ouch. I mentioned earlier that they go in his hips in four spots. Ouch. 3F8 after that…another ouch. TGIF. Andrew has not eaten the last few days. Common with this treatment because of the daily pain and narcotics. He is having mood swings now. Like son, like father.
Because of the chicken pox exposure he had a vaccine and now could delay his next cycle by a week. Don’t know why…we have to get clarification from the doctor.
I have said privately to Ang from the beginning whenever we get frustrated by rules, policies, insurance companies etc. “If this was the President’s kid would we have this problem?” No need to answer, rhetorical of course.
After two weeks apart it will be great to see Andrew again. Ang says his hair is coming back thick. Sounds like everyone (Ang, Andrew and grandpa) are ready to come home. Time to be together as a family again …looking forward to having my bride home again.
You're rather attractive for a beautiful girl...
- Chevy Chase, Caddy Shack
Tuesday, February 25, 2003 7:27 PM CST
GN-BN
Good News.Tested negative for RSV today. They can return to RMDH.
Bad News. RMDH has chicken pox and Andrew has no defenses against it. They will stay in the room tonight.
Tom
Tuesday, February 25, 2003 5:48 AM CST
Andrew got a virus (RSV) and is now checked into the hospital at MSKCC. He cannot be around the other patients at the out patient clinic because it is contagious. He can continue his 3F8 treatment. He and mom will be there for the week but can leave on a pass each day for a few hours. Tom
Wednesday, February 19, 2003 10:14 PM CST
NYC Take 2
Ang and her dad left for New York for the second cycle of anti-bodies. They arrived just ahead of the snowstorm that dumped a couple of feet on the East coast. I wish I could be with them but it is a good decision for me to be home with Em and Nick. Grandpa is a big help with the wheel chair through the snow and he is the overall go-for that is such a big help while Ang tends to Andrew.
Today Ang’s mom flew out to meet them for a long weekend. Plane ticket courtesy of Ang’s cousins Katie and Chris. Thanks guys. Sounds like the doctor’s have not changed the meds but have changed the way they administer the drugs. Ang now injects the GM-CSF at RMDH first thing in the morning before they go to the clinic. They also give the antibody over 90 minutes vs. 30 minutes. It seems be less toxic but the pain is still there. Less hives so far but that is only after 3 rounds. It can change from day to day. He will get another bone marrow test at the end of the two weeks.
We are hanging in there at home. Took Em to her last First (last first?) Communion class on Sunday night. Church had a Potluck dinner that evening…I think “Potluck” is German for Lutheran Social Gathering? I had to cheat and run to the grocery store deli for potato salad and meatballs. What do you expect from me I grew up Catholic…pancakes, bingo, der biergarten, and confession. In that order!
Nick had his last hockey game of the season on Tuesday. Coaches were terrific again this year. They get my wholehearted admiration. Won some/lost some but Nick really enjoyed the season and that is what counts. The other parents were so helpful to our family this season. Special memory the day they had the party to put up x-mas lights at our house.
Now that hockey is done Nick’s sport of the week is lacrosse.
la*crosse (le*kros) noun
1) A game played on a rectangular field by two teams of ten players each, in which participants use a long-handled stick that has a webbed pouch on one end to maneuver a ball into the opposing team's goal.
2) Small town in Wisconsin best know for having the "World's Largest Six Pack", an outdoor tank farm painted up to look like cans of Old Style beer. Trust me I have been there. Pilgrimage of sorts. Tom
Friday, February 14, 2003 3:49 AM CST
I haven’t written in a while. Just tapped (typed) out recently. Andrew finishes radiation today. Last of 15 treatments. He has been very tired but has managed some school over the past week. Mom has had to pick him up at school when he gets too tired. He is excited for the Valentine’s Day party at school later this afternoon. Grandpa and Grandma have been helping he and Emily make their Valentine’s boxes. They have completed all their valentines for each class member. Andrew is also bringing a box of chocolates to the nice ladies in Radiology.
In addition to being tired he has been nauseated and sore. The nausea may be from the blood pressure medication or the radiation.
Quick story. Andrew and I were in the bathroom looking in the mirror. I said, “Do you think we look alike?”
Andrew replied, “We have the same hair, same blue eyes and the same blood pressure.” Smart Alex.
Last weekend Andrew skated with his hockey team on both Saturday and Sunday. Actually played in their game on Sunday. Seems to muster the energy when he needs it.
Sad news. Lost a colleague this week. He leaves behind a wife, three young children and a lot of unanswered questions. We had many things in common. About the same age. We attend the same Church. Relatives in Iowa. Our children close in age. We had common things to talk about and I always welcomed our conversations. He was an excellent co-worker…hard working, intelligent, positive, respected by others. Ready with a smile and quick wit. I miss him.
He and I spoke on the phone the day he died. He called in sick and we discussed how to cover his job that day and about upcoming projects planned for the summer. I can't recall but I probably said what I always say when someone calls into work sick, “hope you’re feeling better” and we hung up.
I’m numb.
Merciful God, I know you are out there. Please show up more often. Tom
Wednesday, February 5, 2003 9:22 PM CST
Where do we go from here….
The question most asked at the fundraiser was what does Andrew have left for treatment. While each child is different this is the best I can summarize.
At the end of next week he will have finished his radiation. Fifteen treatments over three weeks. Each treatment takes less than three minutes once it is set up. The radiation is low dose and is directed at his original tumor site. Left abdominal. The Dr. has not seen many of the common side effects in Andrew. Loss of appetite, nausea and diarrhea. We put a special cream on his skin at the site of radiation but again his skin does not seem to show any adverse affects.
Three rounds of antibody treatment in NYC remain. Each round lasts two weeks with three weeks in-between. If his body responds (his body may create Human Anti Mouse Antibodies - HAMA) he is done after four rounds. If not, he continues two-week treatments for up to two years. If his body responds he is continually tested for HAMA. If he looses his HAMA down the road we start with more trips to NYC to achieve HAMA again. Regardless, if he continues in remission we continue periodic CT scans and Bone Marrow tests.
The other treatment he will start in four weeks will be an oral medication. He is on the oral med only when he is not receiving treatment in NYC. This med continues for six months but I do know a family that has had their daughter on it for nearly three years.
I request special prayers for Chuck Weber. His health needs all the prayers that can be directed his way. After a stroke on January 5th, the same day Andrew left for NYC, he is fighting a reoccurrence of cancer. As you recall Mr. Weber is the father of one of my life long buds and was the neighborhood dad that coached the un-coachables. A man of bottomless patience and humor. Love and prayers directed to Mr. Weber and his family from the "boys of summer". Tom
Sunday, February 2, 2003 7:49 AM CST
It’s a Wonderful Life.
The community came out in droves to support Andrew. The volunteer “angels” earned their wings last night. Thank you is never enough but heartfelt thanks from our family to those that helped make the fundraiser a success.
If I started to say thanks to individuals I would miss people. That would not be right. In general, the fundraiser started with sisters Sieglinde Grivna and Sabrina Olson, Monroe volunteers/moms.
But what they started rippled from Monroe Elementary staff/students/parents to Brooklyn Park Hockey Assoc., Lions Club, and individuals in the community and beyond. Thanks to all. The timing could not have been better for the good news we received from his test results. This made the celebration all the sweeter. Those that saw Andrew witnessed first hand his continuing strength and resiliency.
Robin Williams in Patch Adams: “You treat a disease, you win, you lose. You treat a person I'll guarantee you'll win”.
Bill Murray in Groundhog Day: “Well…what if there is no tomorrow? There wasn't one today”.
Wednesday, January 29, 2003 at 03:58 PM (CST)
RECEIVED THIS MESSAGE AT 3:30 P.M. TODAY!
Dear Dr. Bostrom and Karp Family:
Andrew's BM aspirates and biopsies done Friday 1/24 show no evidence of neuroblastoma. We will repeat the BM tests after next (2nd) cycle of 3F8/GM-CSF, to confirm this favorable response/result.
We will expect blood for HAMA, and assuming HAMA is (-), we will expect to see Andrew back in our clinic for more 3F8 on Mon., 2/17.
- Dr. Kushner
ANDREW SHOWS NO EVIDENCE OF CANCER. THANK GOD, OUR HEALTH CARE PROFESSIONALS AND ANDREW FOR HIS ENDURANCE. ALSO, THANKS TO EVERYONE FOR ALL THEIR PRAYERS AND SUPPORT. NOW WE CONTINUE TO FIGHT AND PRAY THAT HE STAYS CANCER FREE! TOM
Tuesday, January 28, 2003 at 05:21 PM (CST)
Surprising day
We consulted with Dr. Kim, the radiologist yesterday and we had expected to start the 12 days of radiation on Thursday. Surprise, Surprise Gomer. The protocol actually calls for 15 days of radiation with only 14 workdays left before Andrew has to return to Sloan for the next cycle of Antibodies. Low and behold Andrew started today with radiation and will have to double up some days unless they decide to work on a Saturday between now and then.
Dr. Bostrom has made an appointment with a specialist at the U of M for high blood pressure (hypertension) on Feb 6th. Andrew’s blood pressure went up last week and it has not come down significantly. Dr. Kushner, our oncologist in NYC, said the antibodies can cause this but in this case it is too high for too long. If this does not correct itself we will have to go on meds to lower the blood pressure. Appetite seems to be great today, weight is definitely down.
Radiation side effects can range from soreness to nausea. Long term effects he could have that area not develop (muscle/bone) in the radiated area. Left lower abdomen and lower back. That is not a for sure and he could be fine in the long run. Still hope for washboard abs like his dad. Ang describes me as having six-pack abs. Mmmmmm. Me thinks she mocks me.
Andrew was marked today and radiated.
Today a new crime fighter, Dr. Kim, swooped into town in his rocket ship. Pulled out his death ray and zapped Tumor Man's last known whereabouts.
Meanwhile back in Gotham (NYC), Dr. Kushner, a.k.a. City Boy, continues to work over the remaining garrison (bone marrow) of Tumor Man's cowardly minions left behind from the seven-month war.
Andrew had a clinic visit on Monday and his mood was, to say the least, subdued. Twenty-four hours later he and mom stopped by Monroe Elementary for some "mental meds".
The first people they saw were his 2nd grade teacher and class. Hugs, tears, smiles all around. Mom was in tears when she saw all the prizes for the fundraiser this Friday. When Andrew got to his clinic visit today the Monroe Medicine was still with him. The Dr. and nurse couldn’t believe this was the same child from yesterday. Mom told them that’s because he just came from school! He was all chatter about seeing the kids, Mrs. Allen, Mrs. Kopacz, Mr. Olson, Mrs. Laager, Mrs. Hanson and so many others. New day, Old Andrew. Tom
Saturday, January 25, 2003 at 10:15 AM (CST)
New pictures on the link below. The final day of treatment Andrew had high blood pressure and they could not bring it down so they forgo the treatment for the day. He did have his bone marrow biopsy and will get results early next week. Everyone is home now. At least for a few hours. We are off to Nick’s hockey tournament in New Ulm. Andrew seems to be doing well. He has a small appetite and we are going to wean him from the dilaudid this weekend with gradual doses each day. Tom
Tuesday, January 21, 2003 at 02:01 PM (CST)
Saw Beck, Nick and Emily off today. It was some of the best medicine for Andrew to have his brother and sister here. Andrew is about the same today. He was able to sleep through the night but has had nausea today. Two nights ago we were up every two hours. Now I have caught a cold. Can’t wait to get home. NYC is fascinating but I would rather be here under better circumstances. Saw a new family today on the 3rd floor. Same lost look. Same troubled look. Same concern on their faces that we had. This will be a rough ride for them as well.
You feel for everyone here. One boy is having his leg amputated. Another boy who had had the procedure was talking to him the other day. Seems to get around with his prosthetic pretty well and loves to play sports.
Talked to Dr. Kushner the last couple of days. We have a bone marrow test on Friday before Ang and Andrew leave for the airport. Basically we are down to the marrow at this point before we can be classified as in remission. We discussed the way they do radiation here. They radiate the tumor site and anywhere else there was tumor mass. They do not radiate where there were abnormalities unless there is a mass. Andrew did not have masses in the areas of abnormalities. Skull, ribs, back, hip.
Here they radiate two times a day over seven days. Mpls does it once a day over 12 days. Here they also radiate the lymph nodes in the region of the tumor. I have to check with Dr. Bostrom if they do the same in Mpls.
Sunday, January 19, 2003 at 09:58 PM (CST)
Weekend
Saturday we went to the Museum of Natural History. Andrew made a beeline to the dinosaurs. We also saw an IMAX on Mt. Kilimanjaro (sp?). Had some friends that climbed the mountain in Africa so it was interesting to see. Took the subway to Canal Street and China Town where Nick purchased a Rolex Watch from a street vendor. Amazing how a $3500 watch can only cost $10 on the street. I suspect this is not a real Rolex. The kids were tired so we headed back to RMDH.
Sunday has been a bad day for Andrew. Vomiting all day. I stayed with him in the room while Beck, Ang and the kids went to Ground Zero of the World Trade Center. One of the things that they warned us about for the weekend is that Andrew may have withdrawal symptoms from the Dilauden medication. That is the painkiller of choice during his treatments. I believe it because he looks pretty tough today.
The Ronald McDonald House received free tix to the Rangers Vs. the Flyers hockey game tonight. It was going to be the two boys and me but since Andrew was not feeling well Em came along in his place. I can now cross Madison Square Garden off my list of places to see. We had a good time with the other families from the House. Met a family from LA one from Norway and another from New Jersey. Most of them battling the same disease. Tom
Saturday, January 18, 2003 at 08:49 AM (CST)
Thursday and Friday were about the same but he seemed to bounce back faster. Maybe because his brother, sister and Aunt arrived on Thursday night. The whole family together again. Except for our Bishon, Molly, who is on holiday at the Wiese estate for the weekend. Thanks for taking care of the pooch for us. Once the kids arrived Andrew seemed to light up. We got Mexican food and Andrew showed the kids around the RMDH. Cousin Liz who is in the process of moving from here back to TX joined us for the evening.
Friday everyone went to the clinic for his fifth treatment. Nick, Emily and Aunt Becky got to see the place we may be coming back and forth to for the next two years. We could be done in five months if everything goes well but we met a woman and her daughter just finishing up their two years of treatment. The nice thing about this (if there is anything nice) is that he can bounce back when he is home and not worry about low blood counts. That means more school and activities once he has enough strength. Some kids take six months to develop HAMA and others never do. But the antibody can help in the interim.
After Andrew recovered from the treatment Friday (hives, pain in the feet like the other days) we all went to an off Broadway show. Friends of ours got all six of us tickets for the Blue Man Group. Wild and wacky guys you may have seen in Intel Pentium commercials. All the kids loved the show. Closed Circuit to Barb, Dave, Todd, Nan and Mac: Thanks, Andrew had big smiles. That was a lot for one evening so we grabbed a quick bite to eat and then back to the room. One thing about NYC is that it seems to be open all night long. As we were heading home on the bus it seems like the crowds just started to build.
A fundraiser has been organized at Champlin Park High on January 31st. Free admission and from what I am hearing lots of fun. I will include more info on this site in the coming week.
Wednesday, January 15, 2003 at 09:19 PM (CST)
Day 3
Arrived early again today. Height, weight, finger stick for blood counts. Wait for blood counts. Start GM-Csf and wait three hours for the antibodies. Relatively no issues until the end of the ½ hour infusion of 3F8 antibodies. Needed Benedryl for hives that did not make him feel like he was on fire today. Hives stay with him most of the rest of the day. Even on the bottoms of his feet. He is quite the spectacle for the hospital staff. We get many visitors to our room to see the incredible Hive Boy. Again, they seem to control the pain and burning well today until we left the clinic. At one point Andrew, as politely as he could given the drugs and discomfort, told the nurse that she could, “stop talking to me right now”. They always have a lot of questions and he had had enough. We all smiled cause he was trying to be as nice as he could.
We always walk the six blocks to and from the clinic and this week we have a wheelchair for Andrew. On the way back his feet started to hurt. The pain meds had worn off before we left the clinic and we gave him Tylenol and mom held cold towels on his feet to relieve the pain. Once Tylenol kicked in and like last night he seemed to perk up somewhat.
He was hungry for Dominos again tonight. Mom and dad went to the RMDH cafeteria. A very fine restaurant in the area brings in Italian food once a month. That was a nice break from the fast food and pizza that Andrew loves. He got his Dominos and we were treated as well. Tomorrow the big kids fly in with the help of another NB parent that is a pilot. They will stay through the weekend. We miss them and I think that Andrew will be so happy to see his brother and sister. He talks about them all the time. It will be nice to be back together as a family if only for the weekend.
Tuesday, January 14, 2003 at 07:33 PM (CST)
HIVES
We got in early this morning. Started the GM-CSF and the 3F8 by 12:30 pm. Today was totally different from yesterday. No nausea. No complaining that he could not breath. Nothing happened until the end of the 50 ml of 3F8 or 1/2 hour. We were pleased that he had no pain and very little pain med then his body flared into one big hive. He was very verbal about the burning to say the least. No itchiness with this. He felt like he was on fire. His pre meds consisted of benedryl and once he flared he got viseral (sp?) but nothing cut it.
Quick lesson. Pain meds handle your pain but your nerves can also sense heat, cold and pressure.
When the heat came on the pain med can do nothing for it. Consequently he had very little pain meds today and had to ride out the heat or burning with ice packs. I think today was worse and hopefully the nurses will make adjustments for the future. More benedryl during the infusion to combat the hives. He had about 90 min. in the room recovery and rested at home for about an hour. Then we had promised him more of the Pokemon store. He has some pain in the feet and hands but his spirit is up. He is doing well tonight and wants Dominos. All of the Italian restaurants in NYC that have pizza and he wants Dominos. Can't deny him. Whatever he wants. Tom
Monday, January 13, 2003 at 07:35 PM (CST)
Tomorrow this site goes beyond 50,000 hits. Thanks for your caring and support as we keep you updated on Andrew's progress. The author would also like to thank you since all 50,000 hits have been tracked and to my knowledge the site has only been read on coffee break or after work hours. Riiiight.
Saturday, January 11, 2003
It has been seven months to the day since we found out. Since this may be one of his “good” days we decide to get out. We took Andrew to the Metropolitan Museum of Art. He spent most of the time in the Egyptian Art area. He loves the mummies. Can’t believe how large this place is and the incredible art. He had to get a special post card for the art teacher at Monroe. Shhhh. No one tell her. Andrew wants it to be a surprise. I can say it is a work from an impressionist painter, it has a bridge and water lilies but that is all I will say…oh, except the painter is French but no more hints.
From the Met we took a taxi ride to the Pokemon store. (From Picasso to Pokemon. Only in NYC) The store is two floors of nothing but Pokemon. He can’t wait tell his buddy Bret L. about this place. From there it was a short SUBWAY ride (first subway ride for all of us) to 34th street and the Empire State Building. Took him up to the 86th floor to the outside observatory at night. From there you can see the five boroughs of NYC (Manhattan, Brooklyn, Queens, Staten Island and the Bronx), New Jersey and Long Island. From there Mr. Hungry…he is still on an appetite stimulant…needed pizza to we took a bus to Greenwich Village where there was a pizza place on almost every corner. After picking all the pepperonis off the remaining pizza we hopped a train on 8th street and rode it all the way home to 73rd St. One amazing thing about NYC is that we can ride all the subways and busses we want for $4! Jesse Ventura’s light rail seems to pale in comparison to the mass transit in this city.
Sunday, January 12, 2003
Big day yesterday so we did more riding than walking today. Took the subway to the Southern most tip of Manhattan, Battery Park. Hopped the Staten Island Ferry (free!) past the Statue of Liberty (which has been closed since Sept. 11th). Walked a couple of blocks to Wall Street and the New York Stock Exchange. Andrew was not impressed but he liked the large brass bull on Broadway and the statue of George Washington and the site that GW took his oath of office. Andrew enjoyed using his disposable camera at whatever seemed interesting.
Monday, January 13, 2003
Checked in at 10:00 am and met with Dr. Kushner. He must be used to working with 2-4 yr olds cause when he spells out P-A-I-N to mom and dad obviously A-N-D-R-E-W knows what the D-O-C-T-O-R is talking about. Don’t get me wrong. Dr. K is a good man.
We started the IV GM-CSF at 11:20 am. 2-1/2 hours later they start the pain meds and the benedryl for hives. 2:30 pm they started the 30-minute IV infusion of 3F8 (50 ml). At about 20 ml he said he was having hard time breathing. They gave him oxygen. Mom of course has him cradled (best pain med available). At 30 ml he vomited and lay back down. For the most part he lay motionless on pain meds. At one point he had hives/rash on his abdomen. By 3:30 pm they were weaning him from pain meds and he had had two flushes through the IV line to make sure he gets all his 3F8. About 4:30 he was more coherent but vomited again. By 5:30 pm we were checking out and wheeling him back to RMDH. He has vomited once more but mom has given him some zophran. That always seems to help. We have Tylenol and a prescription drug (don’t remember that one) for the night. His hands and feet seem to have some side effects of pain or tingling. They say the first day is the most difficult but they say every day can be different. Yippee.
From the outside it seemed like he was doing relatively well. They kept telling us that he would have severe pain during the infusion. I expected a lot of crying, screaming, writhing etc. The drug attaches to the nerves. I asked the nurse about it. She said that although he seemed at rest his heart rate was in the 180’s when he was experiencing the worst of it and his blood pressure dropped. Silently he was there. I thank God that when the painkillers wore off he never remembered. Andrew was one of twelve kids receiving 3F8 today in the clinic.
First thing he wanted to do was go back to the Pokemon Store. Not tonight kid. You and your mom need some rest. Tom
Friday, January 10, 2003 at 05:56 PM (CST)
First the good news.
The MIBG came back negative this afternoon. So we have the bone scan, CT, MIBG and urine test that are negative. The disappointing news is that the bone marrow still shows a trace of, you know what. Hard to bring myself to say it, let alone write it. It is definitely less than the last time we had a bone marrow. The doctor said that 3 out of 4 times the antibodies will get this trace amount. It is still in his right side as it was pre-transplant. It confirms our decision that we made the right decision to get the antibodies. Every test we have had since the beginning has been better so we thank God for that but we need one last push. As Ang said tonight, "Tom,you have to update the site because Andrew needs all the prayers we can get right now." Andrew can sense mom and dad are sad. We notice he is filling all the long voids in conversations and our red eyes give away the silent tears. I want to say "why" but that does no good so we cling to the doctors promise that he is going to make him better. Mom backed the doctor into a corner on that one. I love her for that. Tom
Thursday, January 09, 2003 at 02:43 PM (CST)
January 7, 2003
Slept in today. Did not have to be at the clinic until 11:00 am. Should not have been tired because we just sat around at the hospital yesterday but it seemed to take it out of us. Today was the bone marrow test. In our last tests they only went in the hips from the back. Here they always check in four locations in the hips. That did not go over well with Andrew. They also put a port under his skin in the right thigh for the injections he will hopefully start tomorrow. We start early tomorrow. 7:40 am check in for CT scans that start at 8:40 am. By noon we will meet with the doctor to go over bone marrow and urine tests. The results from the bone scan yesterday were good. He is moving slow tonight. The MIBG scan is put off until Friday in the afternoon.
I forgot to mention that Andrew was taken off the IV nutrients and his appetite for solid foods has really kicked in. Mom said she did know if she could sleep at night without listening to the IV pump going all night. Once Andrew woke from today’s procedure we hit Wendy’s for lunch and walked back to RMH. He wanted to go directly to the game room. A cool Star Wars video game is his favorite but they have some other racing games that he switches off.
We needed to get out for exercise so we went to the FAO Schwartz Toy Store. From there we walked down to the Cathedral of St. Patrick. Lit a candle and said a few prayers. From there we walked over to see the tree in Rockefeller Square. A walk down 5th Ave. to C of St. Patrick is a who’s who of shopping. Saks (5th Ave of course), Gucci, Coach, Cartier, Godiva, Versace, Tiffany, and many lesser know but just as impressive shops. Doormen outside of each of the fancy shops and security guards in plain view from the sidewalk. We just kept walking. Don’t want to get stiff legs or broken bank accounts! We still need to walk to keep food moving through him as well.
January 8, 2003
Up early today. Had to have Andrew drink a contrast for the CT scans today. Really awful stuff that took him over an hour to drink it mixed with apple juice. The scan was full body scan then a consult with the Doctor about our results. At noon we met with the director of the program Dr. Cheung.
Dr. Kushner then came in and let us know that the bone scan, CT’s and urine tests were all negative! They did not have the bone marrow tests back yet but they seemed to be confident that we were ready to begin the program.
We had some anxious moments when Dr. Cheung was uneasy about us leaving Minneapolis Children’s to come to MSKCC. It is more the politics that we jump hospitals/protocols and his concern is that Mpls realizes Sloan did not “steal” their patient. We assured him that this was solely the parent’s decision. We began the first injection of GM-CSF this afternoon. Nurse had a hard time getting the needle in the port which did not go over well as you can understand. Ang will give the injection to Andrew each day during the procedure. The doctors will give him the 3F8 in the outpatient area. That may take most of the day in the beginning while they try to control the pain, which will most likely be severe in the beginning. Apparently the morphine is not as effective as we would have hoped. Pray this goes quickly. Tomorrow we only have the MIBG injection. This is a radioactive isotope and Andrew has to take potassium for three days (again tastes awful) to protect his thyroid from this. The scan is only on one day here vs. over two days in Mpls and we will have it on Friday afternoon. I have to say that this has been one of the most emotional days in a long time. Waiting for the tests results has been nerve racking. I have been shaky all day. Stress and the lack of sleep the last two nights. After the meeting with the Dr’s I told Ang I was walking around the block. Twenty blocks later I was back at the hospital. So much is racing through my mind the walk did not seem that far or that long. Andrew is doing so well. He has so much energy and we keep beating him down with drugs, tests, long waits, and bone marrow. He just keeps coming back and his smile is infectious. He is disappointed that “Here Mr. Pigeon” does not catch any of these birds on the street. They seem to be too quick for him. Andrew has learned that cabs are everywhere and easily hailed. Mom usually convinces him to walk a few more blocks. Today she and Andrew were discussing why all the strollers have plastic around them… Tom
Tuesday, January 07, 2003 at 09:12 AM (CST)
NYC
January 5, 2003
We’re not in Kansas anymore. Arrived at LaGuardia International around 1:00 P.M. Yellow Taxi to the Ronald McDonald House at 405 East 73rd Street, New York, New York 10021 Room 408. RMH has 11 floors with common kitchens, large living room, library, playroom, computer lab and many activities scheduled. Several kids were scheduled to go to the Knicks vs. Portland game tonight. RMH had a suite for the game. Michael checked us in and Robert showed us all around RMH. Local restaurant sent over pizzas for everyone and a magician entertained the kids and adults alike. Interestingly Michael was telling us the people staying here are from all over the world and after just a few hours I know what he means. English is the second language here. What you gain in activities at the RMH you loose in the creature comforts of the rooms. We have to have all our own linens, two twin beds and an air mattress and clean the room as we go leaving it the way we found it. You get a roll of TP to start and then you are on your own. It helps to keep costs down and have people take ownership in the facility. Overall we are pleased with the facility and the neighborhood.
We ventured out twice today. First, a walk around the block to find the grocery, pharmacy and what we had for restaurants. Discovered that there are many ethnic restaurants and several delicatessens within a block. We have a small neighborhood grocery that has everything in the area smaller than a Cub Foods produce section. Space is a premium here. Picked up Cheerios of course for breakfast. Second time out I hailed my first taxi from a street corner like a pro. I’ve seen it done on TV. Took the taxi to Times Square and Toys R Us. Drove along Central Park and was amazed at all the lights. I told this driver it was our first time in NY and he said, “Never say that, you’ll end up in Harlem with a $50 fare. If you don’t know where you’re going, fake it”. I tipped him a little extra. On the way home I hailed my second taxi, “East 73rd and First Avenue and run us past Rockefeller Square so we can see the tree”. Just like a native but, somehow I think I came off more like Jack Lemmon in “The Out of Towners”.
Andrew is taking it all in. I know he wishes Nick and Emily were here. He keeps referring to his brother or sister. Nick would like this….Emily would like that…Nick likes those games. Etc. Before we left the house this morning at 6:15 am he started to cry and did not want to go. He wondered why he couldn’t stay home. As exciting as this city is we would rather be home. We take a shuttle to the hospital tomorrow morning. MSKCC is only six blocks from here and the shuttle picks us up in the morning around 9:15 am. After check in we meet Dr. Kushner for consult. Tom
Hurry up and wait.
January 6, 2003
Asked for a wake up call. Never called. Asked for the shuttle. Never came. Asked for directions. Could have been better. Checked in at 9:30 a.m. Met the Dr. at 11:00 am. He gave us a scare that we would have our tests too late this week to start the procedure on Wednesday! We were never told it would start on Wednesday but he needs to take the white blood cell stimulant for the first five days before he can start the anti-bodies that start on Monday. Pushed to get the tests done early. He seems to be able to accommodate us. Otherwise we would be heading home after tests. Had blood drawn. Went to Nuclear Medicine for 1:00 pm inject that we had at 2:00 p.m. Scheduled for a 4:00 P.M. bones scan. Had it at 5:00 P.M. While waiting they told us our Wed. scan was cancelled. They ran out of the radio active isotope needed for the MIBG scan. This is so much different from Mpls Children’s Hospital.
While in the waiting room you start to realize that everyone there is for the same cancer. When we went to Minneapolis everyone has something different. Here you have all ages of children from all over the world all here for the same thing. Even inside he hospital space is at a premium. There are so many kids and people here for cancer.
The doctor was very nice and hit it off with Andrew. He couldn’t believe how well Andrew looked and nearly the entire visit Andrew was eating! The doctor explained the procedure. One thing Andrew was not happy about is that he will receive a shot a day for 17 days in a row. They are not using his catheter for his GM-CSF, which is to stimulate white blood cell growth. Hopefully this will become routine for him like it does for kids with diabetes.
Wednesday, January 01, 2003 at 03:18 PM (CST)
New Year
On the last day of 2002 Andrew began to eat again! Pizza of course. He wanted pizza again this morning. After his clinic visit yesterday morning (where his lack of eating was a hot topic) I think that Andrew took it upon himself to begin again. After such a long period without eating and so much nausea I don’t know if he really wanted to eat. He seems to be starting off slowly and hopefully will keep it up…or down for that matter. He is on an appetite stimulant to help.
I forgot to mention in my last journal that Andrew’s eyelashes are coming back. Ang has always been jealous of her youngest child’s long, thick dark eyelashes. The hair hasn’t really started yet but I would expect that any day.
With a little help from our friends Ang, Andrew and I will go to NYC this Sunday. The first week will be tests (Bone Marrow, bone scan, MIBG, CT). Ideally the tests will show complete remission which is far from cured but that is where we have to be right now. All the prayers seem to be working so don't stop now. The following two weeks he will begin the infusion of 3F8 antibodies and GM-CSF. I have added a link to the bottom of this page to help explain the therapy at Sloan Kettering.
When we return from NYC Andrew will begin radiation therapy (RT) here for three weeks. After RT he will go to NYC for another round of 3F8 and GM-CSF. El-em-en-oh-pee.
To close the book on 2002 Andrew spent 78 days in the hospital and had 31 clinic visits. Lots of low moments but when he was feeling well we had a lot of laughs. I look forward to the promise of a new year that finds health and happiness for family and friends. Tom
Saturday, December 28, 2002 at 10:33 AM (CST)
Platelet Man
Clinic visit on Friday. Andrew’s platelets were at 68,000 nearly three times what it was seven days ago. ANC is 3420. You and I have 150,000 and 5000 respectively. He seems to have more color and spunk but still tires easily. The big kids both have hockey tournaments in town this weekend so we are going all different ways. My parents sat with Andrew yesterday, which helps. We have to start to book flight reservations for NYC and hopefully the Ronald McDonald House near Sloan Kettering. Looks like Jerry and Eileen will stay with the big kids. Ang and Andrew will be gone for at least three weeks. I will try to do some commuting back and forth to break it up for work and home.
Thursday, December 26, 2002 at 06:45 PM (CST)
Andrew’s Birthday!
Andrew is 8 today. Birthdays around Christmas are always the pits but Andrew doesn’t seem to mind. Ang invited several people to Chuck E. Cheese’s for pizza, games and prizes. Andrew wanted a Crocodile Hunter cake complete with the hunter wrestling a croc into submission. Crikey! My parents, my sister Pati’s family, Evan and Sam Wood, Cousin Katie, Aunt Becky and her three made it a good size party. Andrew had unlimited amount of tokens to play the games. He loved getting out but the couch with his remote is still his favorite secure place right now.
He is still not eating so he did not get to eat any cake but he seems to have gathered some spunk over the last couple of days. Less vomiting but that could be cause of the stepped up zofran anti nausea meds. Can’t wait until he has an appetite. We have lots of leftovers.
Well I survived Christmas. I got five pairs of gloves. Family joke. I have lost two pairs this year already. I tend to loose things (gloves, cell phones, pagers, wallet, you name it). So each one of the kids, Ang and my in-laws all got me a pair of gloves. I should be set for this winter. Tom
Tuesday, December 24, 2002 at 02:59 PM (CST)
Christmas Eve
We will celebrate with my family tonight. Andrew is good spirits. The doctor stepped up the anti-nausea meds. That seems to help. Got a call from New York today. They have some dates set up. Subsequently we got a reject letter from insurance yesterday. Had verbal assurance that this was all settled a week ago. Not sure what has changed. Ang's employer has assured me they will straighten this out. Of course everyone is out until Monday (frustrating). I will reload and make a run at them next week. Right now we will focus on the kids and making this a happy holiday.
Happy Holidays! Tom
Sunday, December 22, 2002 at 09:42 PM (CST)
Withdrawal Symptoms
Andrew is home and doing well. Thursday the doctor took him off methadone, which helped wean him from the three weeks of morphine. Since taking him off it has been a difficult few days with vomiting and twitching. Refuses to talk most of the time. Still no solid food. If we can just get past this period and start eating again I am sure he will start to turn the corner. Mom tries to get him to take short walks down the street or at least up and down the stairs inside. He continues to take his nutrients IV for twelve hours each night. Ang adds a syringe of vitamins to the IV bag and mixes the TPN and lipids together. She then hooks him up and he goes to sleep. Now that the methadone is done he still gets regalin to make things hopefully go through the system.
Tomorrow we hopefully start to schedule tests at MSKCC in New York. Looks like the start of tests is the week of January 6th. When we got the email from the oncologist in New York Ang cried. After spending three weeks with the family split up, the thought of splitting us up again hit her hard. New pics of Andrew and Mom’s homecoming at www.andrewkarp.org
We are hosting both sides for Christmas this year. Should be fun. Easier here so that Andrew can rest as well as take part in the festivities.
I loved Christmas as a child. Used to poor over the 2” thick department store catalogs looking at toys. Making my list. My parents always made it exciting with elaborate decorations and an arrival of Santa while we hid in the bedroom and listen for the jingle of bells at the front door. Wonderful memories.
As an adult it is certainly not my favorite holiday. Bah Humbug. Ang loves Christmas and I have never really got in the swing of this holiday. I feel like Charlie Brown looking for the real meaning. I have no desire for gifts. Love to give them. Have a hard time receiving them. This year everything pales in comparison to what is really important. This year Ang and I just want one thing and it’s nothing that can be found at any mall or store. We can’t find it under a tree.
I think the real “gift” we can give is in everyday kindness. Just like the kindness and support that so many have shown us in the past few months. Our “tree” already overflows with “gifts” of love and support from family and friends. Tom
Tuesday, December 17, 2002 at 10:30 PM (CST)
Clinic Visit Today
Andrew is doing great. Prayers are working. Blood counts have fluctuated and his liver test called a Biliruben Count(Biliruben –pronounced Billy Ruben) has been slightly above what Dr. Bostrom would like to see (1.4) but even that has come down (1.2). Dr. Bostrom cut back on meds so we are just down to about three meds plus the IV nutrients (TPN and Lipids) each night. Andrew has started to have nibbles of solid food and down to 1 to 2 upchucks a day. Hasn’t really eaten solid food since November 7th. Although his weight has actually gone up.
One of the nurse practicianers that has seen Andrew’s progress has been amazed on how well he has bounced back each time. He is moving slowly but is getting around better each day. Will have to work on stamina and strength. Fell asleep at the kitchen table tonight about 5:00 p.m. with his hand on his cheek.
Grandma and Grandpa M took the boys and mom to Mall of America on Monday night as their Christmas present from them. They hit a restaurant and arcade. Andrew couldn’t get enough of the Skeet Ball machine (mini bowling type game). Big smiles. Nick had a hockey tournament in Alexandria this past weekend. Coach Meyers was kind enough to take him so that mom could stay home and coach Emily's hockey team on Saturday. I stayed with the Bearcub.
Hockey tournaments are fun out of town events that we used to do as a family. Next year. Nick had a great weekend. Four goals, one assist and one player of the game. Who's kid is that?
Last time I wrote we were going to have the week off until today’s clinic visit. Last Friday Andrew was having pains in his side so back to the clinic for tests. He was fine. They are watching his liver closely because his Biliruben (that is a fun word! I just like to say it!) count has been elevated. Today it was down. That is good.
Things seem to be moving along for the approval of anti-body therapy at Memorial Sloan Kettering Cancer Center in New York. The insurance part is still like knocking my head against a wall. That’s ok. I can be as thick headed as they can be. Looks like January in New York for three weeks.
Referrals, second opinions, out of network, experimental, FDA approval, prior approval, clinical trials, primary doctor, managed care unit, primary insurance, secondary insurance, continuation of benefits, co-pay versus 70/30, M.A., CDI, FDA, 3F8, GD-2 Therapy. Sadly enough I am starting to understand much of this. Bottom line is that Andrew will get (and has gotten) the best care available. Period. And that is what we have to fight for as parents. Biliruben. Tom
Thursday, December 12, 2002 at 10:30 PM (CST)
Andrew is in good spirits and getting stronger every day. Nausea seems to be the biggest problem and his counts will have to come up before he can start radiation. Grandma and Grandpa were over today to help out again. The tree is decorated and looks good. From his last clinic visit Dr. Bostrom gave him the week off. That is the longest he has gone without a clinic or hospital in six months.
We continue to wait to see what the insurance companies have to tell us about continued therapy. Would be nice if they would make it a priority. We continue to push for an answer. In some cases they have had the request over two weeks and still we wait. One (we are dealing with three) has requested additional information. That decision would be a load off our minds one way or another. Tom
Sunday, December 08, 2002 at 06:45 PM (CST)
Party at Karp's
Such a joyful day. Walsh’s brought over our first live tree and set it up. Nick's hockey team decorated the outside of our house with lights. They brought food, drinks and laughter. Nick and his team shoveled off the pond and skated the entire afternoon. Andrew made his way to the pond and insisted on skating! This is the boy that was just released from the hospital.
Ang told the nurses several months ago, “This will not be your typical patient. He will be a fighter and will amaze you.” He was SKATING, PASSING AND SHOOTING today! If you want to look up toughness tonight in your Webster’s Dictionary it has Andrew’s name after it. If it doesn’t you need a new dictionary. Tom
Saturday, December 07, 2002 at 10:07 AM (CST)
Rest and Recovery
Thursday Dec 5, 2002
Arrived at the hospital just before 7:00 pm tonight. Em and Nick had piano lessons on Thursday as usual and we headed for the hospital. Mom and the big kids headed to McDonalds for dinner while I sit with the sleeping Bearcub. He had a busy day. X-ray, walks on the floor and a bath. The bath is the least favorite of Andrew’s. He just hates taking baths. He was admitted to the hospital for this round of chemo four weeks ago today. I have not been very good about updating for the past couple of weeks. Maybe the holiday or maybe the numbness I feel but this seemed to be the last thing I wanted to do when I got a free moment.
What’s next? That is the million-dollar question. Our protocol calls for radiation to the tumor site for three weeks as an outpatient and then six months of oral medication. If things were only that simple…
We have been offered an additional study here at Mpls Children’s that would, if we were randomly selected, include injections of monoclonal antibodies. The antibodies come from mice and are taken in cycles of 10 days with three weeks off. This is a treatment that is not new in cancer therapy. Studies have shown that this therapy can help with long-term recovery. Given the improved chances we have decided that we want Andrew to have the therapy.
That means not accepting the study! We will travel to Sloan Kettering Cancer Center in New York City where this is given to all patients with this condition. The therapy will be ongoing and will last twenty weeks to two years depending upon Andrew’s own body’s ability to show signs of creating his own antibodies without the aide of the injections. Once he shows this ability his body will recognize the cancer in the future and kill it.
One of the crazy and sometimes frustrating things about major illnesses is the medical insurance. In the past six months Ang and I have logged hundreds of phone calls to question, clarify and curse the several hundred statements and bills we have received. Now our insurance carrier through GM is changing as of the first of the year. That means we are changing hospitals to SKCC and insurance almost simultaneously. If I wasn’t crazy yet you can now call the men in the white jackets and haul me away. The people at Minneapolis Children’ s, Dr. Bostrom and our primary doctor (the first to examine Andrew on June 11) are being very helpful in facilitating the paperwork. Now we need the insurance companies and medical assistance to come through.
Friday
Andrew is doing great and will most likely come home on Saturday. He will need three weeks of rest and recovery before radiation but he looks so much better. First time since November 15th that he has not been hooked up to something. Nausea and weakness is still a problem but he perked up when he got to go to the fourth floor to Physical Therapy.
They have all kinds of neat stuff to play on. He cruised around on a scooter. He was tired out but happy. Nick went to practice tonight and Em went to friends to sleep over. I went to the hospital and watched the Disney Channel with the Bearcub. With the prospect of coming home I can tell that it has had a definite affect on mom as well. She is always upbeat but she has not gotten a good night sleep in 23 days. That can wear on the “Mom of the Year”. She really is amazing. She knows what care Andrew needs and when he needs it better then most of the professionals.
Saturday - Homecoming
I just got off the phone with Ang. Dr. Bostrom stopped in this morning and the Bearcub and mom are coming home ahead of schedule! It will take a while to check out. I am taking Nick and Em clothes shopping. Now that is a new one for dad. They need clothes for school and church. Mom helped me out by writing everything down.
Emily – clothes for church.
*Black Tights (sort of sheer). Make sure LONG ENOUGH.
Nick – clothes for school band concert and church.
*Button Down Long Sleeve white oxford
*Dark (Blue or Black) Dress Pants. (May need pleats)
*Dress Shoes
Big weekend ahead. Walsh’s are bringing a live Christmas tree (we have never had a live tree) and Nick’s hockey team is coming over to decorate the Christmas lights on the outside of our house. They wanted to help out and they organized a party out of it for the parents and kids. Lights take two hands so we will assign designated beverage holders for the people on the ladders. Earlier in the week the Supervisor’s organization that I work with presented Ang and I will a check at their annual holiday dinner. They sold and distributed over 650 Christmas wreaths with the proceeds going towards medical expenses for Andrew. Ang and I will always remember what they did for us whenever we see a wreath. Again, we are overwhelmed with the show of caring and support. Tom
Monday, December 02, 2002 at 10:13 PM (CST)
Five Hour Furlough.
Andrew came home! Just for a few hours but Dr. Bostrom had given Andrew a five-hour pass to go home. He is still hooked up to the morphine and will continue to need inpatient care but his blood counts are good right now and he needed a break from the hospital after 17 days in the hospital. The nurse agreed that Andrew needs a mental break from the hospital as well. Ang returned with him tonight. He may be able to come home for good in 5 to 7 days. Ahead of schedule.
Everything is looking up. Andrew has been to the depths and has come back to us. He is weak and still recovering from many different problems but he is definitely improving. Everything needs to heal. He saw himself in the bathroom mirror for the first time in nearly three weeks. Mom had to comfort him and let him know he would be ok.
The physical healing will come with time. For those few that have witnessed Andrew or a stem cell rescue patient it will stay with you forever. The treatment for his cancer is difficult and I hope that his narcotic induced pain relief will erase his memory of these past couple of weeks. Ang and I are stuck with the memory but also with the hope that everything is still progressing in the right direction.
I attended the funeral today of a WW II veteran. He was injured in Germany at the “Battle of the Bulge”. Received the Purple Heart. Bronze Star. Numerous commendations. Commander of VFW Post #141. Patriot. Hero. He was my uncle, Desmond “Debs” Kindseth. I have known him all my life and knew little of his life. I knew him not as a war hero but as my mother’s oldest brother. Uncle Debs loved his family and the outdoors. He affectionately called my mom "Sis". He smoked a pipe. When I was young we would drive to Kenyon, MN to spend the day with my grandmother, aunt, uncle and cousins. Happy memories. The grown ups would “visit” while the kids would find adventure and mischief. Once my cousin and I caught a baby Gardner snake and I hid it in the front pocket of my Toughskin jeans for the 90 minutes drive home. I now check my kid’s pockets carefully. Especially Andrew’s.
After the priest concluded the service at the gravesite the vets folded the U.S. flag, handed it to my aunt and saluted her. The guard fired three rounds and taps was played. I will remember my uncle as kind, gentle and positive. I loved the smell of his pipe. Tom
Wednesday, November 27, 2002 at 07:49 AM (CST)
Tuesday November 26, 2002, 10:30 p.m. (One month until Andrew turns 8!)
From Ang:
It’s now the end of Day 11 after receiving the stem cells. I know there hasn’t been much in the way of journal entries – it’s hard to put into words what we’ve been going through. No amount of preparation could have actually prepared us.
When we got here for the stem cells, Andrew only had 7000 platelets. Given Andrew’s history of nosebleeds – that was scary (we were told we need 50,000-60,000 to stop a heavy nosebleed). Andrew was still throwing up from the chemo and beginning to get a lot of sores in his mouth and down his throat. The sores also cause excess mucus. All of this together caused throwing up, gagging and coughing and more than one sleepless night with nosebleeds. Together we “assumed the position” so I could pinch his nose and hold his head. We learned with our first nosebleed this past summer – he can’t lean back or it goes down – and then comes back up… One of our nights earlier this stay – and I can’t remember which – he told me his neck and shoulders hurt. I started to cry and he said to me, “Mom, you just worry about my nose, I’ll worry about the rest of my body.” Over the next few nights, he learned how to sleep sitting with his head in my hands.
The low platelets could not be improved with transfusions – each day we had less and less. Dr. Bostrom said the chemo had damaged the blood vessels and it was likely that all the platelets were sticking to the blood vessels and then dying. As a result of the lack of platelets, we now have a little boy who looks like he has been beaten. Both eyes are black and blue (as well as the whites of his eyes have broken blood vessels), his face, arms, legs and torso also look bruised. We thought we had “hit bottom” by about day six (Nov 21st). Then they started Andrew on some stronger anti-nausea medicine (which also made him confused) and twice a day nebulizer to help the mucus in his throat. The throwing up decreased, the mucus decreased and the nosebleeds stopped.
Then, the day of the 23rd, he started retaining fluids. Again, this is due to the damage the chemo caused to his blood system. He was unable to go potty – so he had to have a catheter put in. (Luckily the morphine had been increased a bit each day.) By the evening, there was so much fluid build up in his chest it was pushing on his lungs so he couldn’t breathe well and they started an oxygen mask. (At this point we were assigned our own nurse.) Then he started running a fever. The idea that the morphine made him comfortable wouldn’t be how I would explain it. The morphine made him not hurt and not remember – but he was anything but resting peacefully. And so, we “hit bottom” during the night. He did not stop moving all night. He pulled at the oxygen mask, reached for things that weren’t there, talked but didn’t make sense, and each breath came with a little grunt. My head never touched the pillow. And every time I started to cry – Andrew would open his eyes and say, “No more tears Mom,” and then seem to return to his confusion. The doctor from the intensive care unit came in – but decided he was okay where he was (in our room). It was such an incredibly long night. There is no medicine to make a mom’s heart stop hurting when she watches her sick baby. I felt so alone – not wanting to wake Tom unless we had to go to the ICU. I felt like everyone was sleeping and I was the only one praying. So I prayed with all my heart that God would hold Andrew closer and make him comfortable. I didn’t want to leave Andrew’s side to get my Bible and look for some good passages, but earlier in the evening, Tom had printed out some of the journal entries and emails. It had a quote from Isaiah 40 verse 31 “..but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” (Thanks Bart!!) I read this many times during the night. And then as the night wore on, I was doubting that God was listening…but, when we received his counts Sunday morning, I realized God was with Andrew and we saw our first improvement to his counts!!
When the doctor and nurse practitioner came in first thing Sunday morning, he had them both nearly in tears. I was a wreck and crying and once again he said, “Don’t cry Mom.” Then he told then that he wished that Make-A-Wish could make his mom happy.
Monday and this morning (Tuesday) his counts have continued to improve! We are now focusing on getting his little body better. Chest x-rays on Saturday and again on Monday have shown that his lungs are clear. But Monday we did find sores on his bottom. With the nearly 20 pounds of fluids in his body he prefers to sit up since there is too much pressure on his lungs to lay down – so now he has a special air mattress to change the pressure under him. The doctor ordered diuretics to be given every three hours. From Monday a.m. until Tuesday a.m. he lost about 4 pounds of water (thank goodness for the catheter!) His “confused activity” had not stopped. Sunday night and Monday night I got help from the nursing staff to keep a constant watch through the night so I could get some sleep. Now late today (Tuesday) they are starting to slowly reduce the morphine. He is more alert and less confused tonight – the most peaceful I have seen him since Saturday.
His mouth sores are slowly healing, but his nutrition is from his IV. He has however, been taking in water for about 3 days using a small medicine syringe (it was his idea!!) He couldn’t use a straw because it hurt to suck and drinking out of a cup was too difficult and too much liquid.
I have not spent a day alone with Andrew for quite some time. My parents have been here, my sisters have been here and Tom has been here (Nick and Em were here before Saturday and again this evening). There is nothing that anyone could have said to me to make me leave the last few nights.
Thanksgiving Tom wants me to spend at my parents’ with Nick and Em. I know a boy who won’t be too happy with that – but I think I’ll take Tom up on his offer and bring him some good leftovers. We have so much to be thankful for this year. We have a son who is so very strong. And we have so many wonderful people praying for us, thinking about us, and helping us out.
Wednesday, November 20, 2002 at 10:12 PM (CST)
Lots of P and M
This is the low we were warned about, but could never prepare for. I don’t particularly want to go into detail here. Suffice it to say Andrew needs Prayers and Morphine. Barring complications the stem cells should start to kick in starting 10–14 days after the infusion. Day 10 is next Monday. Then he will need to heal.
Received meals this week for our family. Very nice and tasted great. Froze some of it to save for later. Thanks to those that have given rides to the kids for sports and activities. Watched the big kids for us. Visited the hospital. Right now his immune system is very low so we need to be careful for colds, infection, bacteria etc. Best to call our house if you want updates. I will return calls but right now mom has her hands full at the hospital and tries to get sleep whenever she can. Thanks.Tom
Saturday, November 16, 2002 at 10:31 AM (CST)
Stem Cell Rescue
Mom and Andrew headed to the hospital yesterday morning. I came along shortly after once Emily was on the bus for school. They got checked in to the 8th floor for what will be a 3-4 week stay. Andrew was convinced that he was coming home after the stem cells were in. Doctor Bostrom saw Andrew a couple of times yesterday and prescribed morphine for his pain. No such meds for mom and dad’s pain. Brian, the Champlin, anointed Andrew before the stem cell infusion. Nurse Jean (one of our favorites), Dr. Bostrom, Brian, Ang and I laid our hands on Andrew while Brian said a short prayer and then we all said the Lord’s Prayer together.
Stem Cell transplant can get dicey if there are complications but Andrew’s went smoothly. Boring actually. The thaw them out and give them IV. Takes about 45 minutes. Total volume of the stem cells is less than a school milk carton. These are Andrew’s stem cells that were harvested July 24th. Each stem cell divides in two. One half matures into either a red or white blood cell or a platelet. The other half will divide again to do the same thing. Normally happens in your bone marrow where your blood is made. Right now his ANC is just about zero. He will get transfusions of platelets and red blood cells as well because it will take 10-14 days for the stem cells to begin to take over. White blood cells (the one’s that fight off infection) are the slowest to come back. Stem cells are the Rescue Rangers.
He had a rough night with a 103 temp and nausea. Dr. Smith this morning wants to try a different anti-biotic. The fever could be from several things but they don’t want to take any chances. He’s feisty this morning.
Occupational therapist was in yesterday to check muscle strength. Despite five months of inactivity the muscles are strong. The Physical Therapist will stop by today to plan out how he will get PT over the next few weeks. Tom
Wednesday, November 13, 2002 at 09:04 PM (CST)
Nurse visit again today. Hospital also called wondering about their #1 personality. They must miss him. We have an open invitation to come back at anytime. They are somewhat surprised he is home at all. Molly is keeping him company on the couch tonight.
Yeast infection has covered the inside of his mouth and coated his tongue. Does not eat or drink much so he gets IV fluids at night. He and mom have been walking down the street to get out in the fresh air. Walked down to the bus stop to meet Emily off the bus this afternoon. He is quiet unless something strikes his fancy.
He broke mom's heart last night. After prayers in bed Andrew asked mom to keep his Softie (Andrew's blanket) when he "goes". Shocked, she didn't ask him what he meant. Needless to say mom was shaken. I told her he meant when he grows up and moves out of the house. These kids aren't getting free food, rent, utilities, laundry and toys forever.
Andrew is a bright child and we don't know what he has entirely picked up over the past five months. Or what he is thinking. He promised mom early on he would fight so we will hold him to his promise. Dad
Tuesday, November 12, 2002 at 06:33 PM (CST)
Home!
We have alway found Andrew does better at home recovering than at the hospital.
Andrew was feeling well enough to come home on Monday night after he finished his last treatment with the Justice League. When he hits bottom we will return to the hospital until his stem cell infusion "rescues" him. He is quiet today but he convinced mom to take him to Target. He didn't want or need anything but he wanted out of the house. Threw up before, during and after the visit to Target but didn't seem to bother him. Lots of that over the past five months. He and mom also went for short walks out of the house to get fresh air.
Andrew's hockey coach dropped off his jersey the other day. Andrew will be #3 (#1 in your heart) this year. Get the stem cells on Friday as an outpatient unless we have to go back to the hospital before that time.
Em has dance tonight. Parents Night. Parents can come in and watch the rehearsal. Emily is glad mom took her to dance vs. dad! I tend to embarrass her in front of her 10- year old girl friends. Not sure why :) Dad
Sunday, November 10, 2002 at 08:31 PM (CST)
Nick and Em are home. They had a great time in Texas. Stopped by the nursing home to see my dad this morning. He may finally get to come home on Wednesday. Grandpa and Grandma M brought lunch to Ang at the hospital. I came by later and stayed until I picked up the big kids at the airport. Andrew has some nausea but I bet he comes home tomorrow night. No school or crowds if he does come home. Blood counts will drop at one point but we don't want him catching anything he can't fight off later. Tom
Saturday, November 09, 2002 at 07:19 PM (CST)
More Justice League
Continues to receive chemo but today was a special day at the hospital. Mom got permission for Molly (10 lb. whiny Bischon Friese) to come to the hospital. I took her with me on my visit today. She was a hit with Andrew and he enjoyed showing his friends on the 8th floor his dog.
Yesterday was a special day too. Ang and I had our 22-year anniversary yesterday. 22 years ago on Nov. 8th we had our first date. Seniors in high school. She asked me out (I will never admit it). Our first date went something like this… I brought her a rose; we went to a movie (Private Benjamin) at the Northtown Theater (no longer there) and stopped at Lunds in New Hope (also no longer there) for ice cream cones. Yes, we kissed.
This year I brought her a rose at the hospital. Forgot – no live plants on the 8th floor. I rented Private Benjamin and brought it to the hospital. Didn’t realize it is rated R. No R- rated movies in front of the kids. I bought a bucket of Hagen Daz chocolate ice cream. No rules against ice cream - YES. We ate it and just hung out in Andrew’s room last night. Yes, we kissed.
Andrew continues to do well. Food does not look good. He is convinced that he is coming home on Monday. It will be up to the doctor. Tom
Thursday, November 07, 2002 at 10:05 PM (CST)
Chemo Seven Starts
Three chemo drugs this week. The tough stuff. When the nurse shows up protected head to toe with a syringe of "pure chemo" (her words) you know...First batch was rejected by our nurse because it only has a one-hour shelf life and the pharmacy did not deliver it on time. No IV bag for this bad dude. Injects right into the bloodstream by hand. Mouth sores, hearing loss, organ damage...No one should have to sign his or her name on a release that does this to a child.
Mom is staying at the hospital. Home Alone. I dropped Nick and Em at the airport to go to Ang's cousins in Texas. Remember the 10,000 firecrackers? Same dudes. I may have to deprogram my children when they get home from Club Fun in Texas. Ang's cousin Katie and her husband Chris generously arranged the trip, which gives Em and Nick a chance to get away.
SHHHHHH...Andrew does not know about the trip his brother and sister are taking. We don't want Andrew to feel like he is missing out but the older kids needed to feel "special" too. I will pick them up on Sunday night from the airport.
Andrew started reading "Harry Potter" yesterday! He needs help with some words but our precocious 2nd grader has set his mind on reading a big kids book. Nick didn't read HP until 4th grade and he is our resident genius.
People always ask first, "How is Andrew?" and then they may ask, "How is your wife (or kids or you) doing?" It has been five months. We are doing well. The strain has frayed us along the edges. Other than Andrew, I think Emily is doing better than any of us. She loves her brother and is kind to all. Not a mean bone in her body and seems to be extremely well adjusted. Thanks for asking. Tom
Wednesday, November 06, 2002 at 07:52 AM (CST)
Minor bump in the road. Blood counts are too low to start chemo number seven. Had blood drawn on Monday and Tuesday. One day the platelets were too low and the second day the ANC was too low. We will try again on Thursday. Great news on the school levy. Not everything passed but at least we are not making budget cuts! Thanks. Tom
Sunday, November 03, 2002 at 04:03 PM (CST)
Test Results and Halloween
Andrew made it to the school Halloween parade and party! Soon there will be more pictures posted of the pancake breakfast and Halloween. Link to Andrew’s other website below. The pictures of Andrew tell the story of a happy boy on Halloween. What the pictures do not show are a very happy mom and dad. Although this has been a busy week the tests came back very good.
The EKG and echocardiogram came back normal. The MIBG showed no additional tumor at the tumor sight or anywhere else it could detect. The surgeon, Dr. Roback did his job to perfection. Dr. Bostrom had called on Saturday to give the good news. We still have the tumor cells in the marrow to deal with but that is what the next chemo is for! Bone marrow started at 45-50% and is down to 5% tumor. One last fight for the Justice League.
Halloween was cold!! Andrew went trick-or-treat with his bud Cole. They were troopers in the cold and got a good haul of candy. Cole’s dad and I took the boys around the block until the boys wanted to go home to warm up. In one of the pics he is holding his greatest prize. “A whole Hershey bar”. Not just a bite size. He heard from Nick that one house gave them out last year and sure enough he got one this year.
He is feeling great. Brooklyn Park Hockey allowed Andrew to be on a team this season. His team had practices this weekend so we gave him the option of skating with his team. He opted not to practice. Understandable. Best to save all that strength for the hospital. I have a book of Jokes that McKinley Elementary (Ham Lake, MN) made for Andrew. I will save it for when he is feeling low at the hospital to do some cheering up.
Em and Mom have a hockey practice (Ang helps coach the girls) this afternoon so the boys and I will pick them up from practice for dinner and a movie. We will be apart as a family for the next month so one last hurrah. Tonight Andrew wants to go to Santa Clause II. Andrew’s choice of restaurants as well (of course).
Last night a dinner was dropped off by one of Ang's friends from work. Very good and the chocolate chip cookies didn’t make it to the next morning. No nuts…just the way I like them. I think Ang puts nuts in her cookies to slow me down. So many people have helped us over the past five months. Thank you. Tom
P.S. Elections on Tuesday. Make sure you are informed about the school levy. Don't be too busy to vote. We need your support.
Wednesday, October 30, 2002 at 08:15 PM (CST)
Picture day and 2nd Grade Field Trip
Yesterday Andrew went back to school and had a busy day. First were school pictures. He wore his green and blue striped shirt. Very sharp. Sharp Karp. Then all the second graders went to Orchestra Hall for a field trip. He enjoyed the music. Auditory test Monday morning indicated a loss of hearing in the high ranges. Does not seem to affect him. He hears speech and the most common sounds very well. If a little loss in hearing is the only long-term affect we are doing well.
Field trip was cut short by a bloody nose. Bumped into another child at the park after lunch. No other mothers were on the trip but Ang was allowed to go…most likely for this type of incident. The nose stopped but not after high anxiety for Andrew.
“I don’t want to go to the hospital!”
“I don’t have enough platelets to stop a bloody nose!”
How many 2nd graders know their platelet count. Mom calmed him and they headed home. He seemed to be in good spirits last night.
More tests today. Injection of radioactive dye today for the MIBG scan tomorrow. The dye can wipe out your thyroid so he has to take potassium drops for a couple of days to protect the thyroid gland. CT scan today to check for tumor in abdomen and chest.
Dr. Bostrom called tonight to give us results of the bone marrow, CT and kidney test. Found 5% tumor in the right side of his marrow. We hope the final chemo will wipe out the 5% or it will mature into harmless cells. CT scan was normal! The bone scan was clean again! The kidney test showed no damage by the chemo! He will do an EKG and echocardiogram to check his heart on Friday.
No one can ever doubt the strength of Andrews “heart” no matter what the results of those tests.
We had another family tradition tonight. Carving of the pumpkins. One of my favorites. Nick hates the goo. Emily loves the goo. Andrew likes the fact that he is finally old enough to use the cutting tool. Platelets be damned. Tom
Monday, October 28, 2002 at 06:56 PM (CST)
Long day of tests.
Had to be at the hospital at 7:30 am for bone marrow on both sides, flu shot, kidney test, hearing test and bone scan. He was put under for the bone marrow and the flu shot. He didn’t need pain meds, as usual, for the procedure but lots of tears cause he hates to be put under. Don’t blame him after the last surgery and long recovery. The tests all seemed to go well but we won’t have results until Friday. The bone marrow is the important one right now. Pray for no cancer in the marrow.
Yesterday Andrew and I stayed home while mom took the kids to church. His counts were too low for crowds. We did attend a family only healing service at noon at Becky’s church, Lord of Life, in Ramsey, MN. Then we went to Becky’s for lunch. Andrew and Nick went hunting with Uncle Phil in the fields out back of their home. Phil had a couple of yahoos dressed in blaze orange jackets and hats. Amanda the golden lab scared up a couple of pheasants but the hunters came back empty handed. Andrew was heard to say, “Slow down Phil! My legs are short!” Every so often we would see the great hunter disappear as he took a header in the field. I think he prefers fishing over hunting.
Sad news of Senator Paul Wellstone’s death. I knew him as Prof. Wellstone. He was a college professor of mine. I told my son Nick that Senator Wellstone was my current age when I took a political science class from him in 1982. He was running for state auditor at the time and lost to incumbent Arne Carlson. After the election he was philosophical in class. “Tough to win an election in Minnesota when the two opposing names on the ballot are Carlson vs. Wellstone.”
He was a feisty lecturer and would arrive to class a couple of minutes late and hit the ground running. Tough to do at 8:30 am while you moonlighted on the campaign trail each night. Incredible energy. I used to see him lifting weights and working out at the college weight room. He was an All American Division I wrestler at North Carolina. Wellstone was a REAL wrestler and a REAL public servant. Two things our current Gov. cannot say. The night before he died Ang and I discussed briefly the senate candidates. I surprised her when I said I was voting for Wellstone. Tom
Saturday, October 26, 2002 at 05:27 PM (CDT)
Back to the hospital.
Andrew’s blood counts were low and the nosebleed started about 12:30 A.M. last night. I called Nancy Wood and she came over to watch Nick and Em while mom, dad and Andrew headed for the ER. Dr. Bostrom then wanted us to be admitted to the hospital once we got there. Bleeding stopped around 4:00 A.M. about the time he received his first transfusion of platelets. Later in the morning he received a transfusion of red blood cells as well.
I was able to get back this morning to take Em to hockey and the hockey parents meeting to kick off the year. Ang is one of the assistant coaches again this year for the girls hockey team and hopefully there will be more time later on when she can spend more time with Emily and the other girls. Not this morning.
I went back to the hospital around 2:00 P.M. and Andrew was perky and excited to head home. He is home and feeling great now. Nosebleeds are not life threatening but they won’t stop unless the platelets are available in your body to help clot.
Monroe Elementary PTO sponsored a blood drive this morning. I wanted to go but we ended up at Children’s Hospital. Giving blood is so important. That is what made Andrew’s recovery last night possible. Give blood when and if you can. Tom
Thursday, October 24, 2002 at 08:07 PM (CDT)
New website courtesy of Ang's cousins. I will post pictures on the new site. It can be accessed from the link at the bottom of this page. Caringbridge is great but only three pics at a time can be displayed on Caringbridge. I have hesitated to change the pictures on this site. From the beginning I wanted to remember Andrew as he was. To hold on to our life before cancer. This was never supposed to happen to Andrew, my wife, and my family. Dear God make the cancer stop. Dad
Wednesday, October 23, 2002 at 05:32 PM (CDT)
Andrew attended school on Monday and part of Tuesday. Pretty worn out after the weekend and being back at school for a couple of days. Tuesday morning had a clinic visit. Had Dr. Bostrom in clinic. Nice to have our primary Dr. who has been with us since the beginning. He lined up a battery of tests for next week. MIBG, bone scan, CT scan, kidney test, heart test, hearing test, spelling test (checking to see if you were paying attention). Doctor thinks Andrew is doing well. Some of the weight has come back from the surgery. 2 lbs. Dr. Bostrom also presented a study we may be eligible for after radiation.
Scary because they randomize you into the test and you have a 50/50 chance of getting in. From what I have researched the study is a good thing. I pray we qualify and get in. Only other option might be to go to Memorial Sloan Kettering in New York for the procedure. Procedure takes six months and has a week hospital stay each month.
Blood counts are dropping this week and he has a mouth sore that is preventing him from eating and drinking very much. He also says it is sore in his chest area when he swallows. The nurse seems to think he may have another sore in his esophagus. Bracing for chemo number 7 first week in November. That is the tough one. Knowing Andrew he will do well. Tom
Sunday, October 20, 2002 at 12:46 PM (CDT)
Pancake breakfast yesterday. No words can explain the generosity and feeling of support our family felt from the people that were here in body and spirit. Money was raised but more importantly our spirits were lifted. It was a life-changing event. Thank you.
Thank you to the people and organizations that helped put on the event.
Faith Lutheran Church
Faith Lutheran Social Ministries
Women of Faith
Lutheran Brotherhood
General Mills Inc.
Volunteers
Our Family
Our Friends
Recapping the week. Andrew finished his sixth round of chemotherapy on Thursday. He actually was discharged from the hospital feeling better than when he checked in last Monday. Each day he continued to get stronger. His appetite seems to have returned but all the medicines he gets at home seems to still upset his stomach. Andrew was very much a seven year old at the pancake breakfast. Avoided the grown ups and explored the church with the rest of the kids. The atmosphere was that of a wedding reception. Friends, family, people we know, people we don’t know. Andrew was able to attend Sunday school today. His class had sent him a card last week and kept him up on their activities.
After running around at the breakfast his leg muscles were very sore this morning. It’s a good type of soreness. With all the hospital stays over the past 4-1/2 months he will have to building up some strength after all of his treatments. It is snowing here today. After church Andrew scooted outside and shuffled through the snow. Should have seen his smile. He loves the snow. He should be able to attend school for part of this week which I believe helps with the recovery. Clinic visits to monitor his blood counts, as they will continue to dip this week. Once they get too low he will stay at home. If he spikes a fever… back to Children’s Hospital. Tom
Wednesday, October 16, 2002 at 10:05 PM (CDT)
One KFC chicken strip, ½ a grilled cheese sandwich and a little chocolate cake. May not seem like a lot but Andrew has started to eat again. Brings tears to my eyes. Mom took a break and came home to be with Nick and Em on Wednesday.
Andrew and I watched the SECOND Star Wars, “Empire Strikes Back”, at the hospital. Andrew says it is the FOURTH Star Wars (and he is right). I can’t keep all the episodes straight. George Lucas has a way of messing with the natural order of things. Rocky never jumped back in time. Don’t get me going on the whole “Back to the Future” fiasco. Anyway, “Anakin” Karp can’t get enough of Star Wars this week. He checked out a book from the hospital library and Jackson was kind enough to let him play with his Star Wars toy.
He was in very good spirits for the last two days. Only once did he throw up in almost 48 hours. That is a very good thing for everyone. Andrew’s roommate, Christopher went home today. Whew. He makes some of my college roommates look like choirboys. (I’m picturing James W. on a bender right now). I shouldn’t judge Chris. These kids are sick, in strange surroundings with strange people. Most likely they are scared and in pain. Christopher had to have blood drawn at 1:00 A.M. last night. Took four people to hold Christopher down and he was winning the struggle according to Ang.
We are hoping to come home tomorrow night when the last of the three chemo drugs finishes for the week. Worst case he will come home on Friday A.M. We are planning on a family outing to Osceola, Wisconsin on Friday for a train ride. Pancake Breakfast on Saturday morning. Hoping Andrew has his appetite kicked in by then. Tom
Monday, October 14, 2002 at 10:14 PM (CDT)
Justice League Rides Again.
Checked in for the sixth round of chemotherapy. Have not had a chemo IV in 4-1/2 weeks. Crowded on the 8th floor tonight. Seems like everyone Ang has gotten to know is there. Andrew has a roommate, Christopher, who is about the same age. Andrew is eating a few pretzels and chicken sounded good to him but not good enough to actually eat.
I stopped in for a while and Aunt Becky and her kids were there. Emily had Girl Scouts tonight and Nick stayed home to finish a paper he has been working on. I brought Ang a chicken potpie. She likes them. Can’t stand ‘em myself. The kids and I heated up a dinner the church had dropped off. Makes it easy to heat and serve for the kids and I. Thanks. They called from church about bringing more food for us. Freezer is busting at the seams right now maybe during round seven of chemo.
We hope Andrew can come home by the weekend and he may get to go to school for the Halloween party and class pictures as he comes out of this round! That would be nice but it depends on how well he feels. Tom
Sunday, October 13, 2002 at 09:50 PM (CDT)
A few Cheerios and a small bowl of pretzels today but that is all. Last real meal was two weeks ago Monday. The stomach and digestion is not functioning, as it should after the surgery. We have seen some signs of improvement and Andrew gets nutrition through IV feedings. TPN is the name of what he gets each night for twelve hours. The doctor wants him on a laxative twice a day vs. the old once a day. He may start his next round of chemo Monday. Went out last night to Jean and John Ness’ with some other couples from hockey. The kids came along of course. It was good to get Andrew out of the house and playing with other kids. Nice to get mom and dad out too.
Andrew goes on walks outside which seem to have helped. He still gets nauseated three to four times a day. Finally, Ang just took him along on errands yesterday with a bucket. Sitting here waiting for the next heave has gotten routine and stressful all at once. On the errand Andrew picked up his Halloween costume. He will be Anakin Skywalker this year. I helped him put the batteries in his new light saber when he got home. Last year he was Sponge Bob Square Pants.
Speaking of Sponge Bob…
Monroe Elementary collected over $1200 to be donated to the non-profit, Caring Bridge (free web pages for families receiving hospital care). Staff and students at Monroe had a “penny drop” this week to raise funds. They made a life size Sponge Bob and collected money in his pants. They filled several buckets with change. Ms. Hanson, the art teacher, called to let Emily know how well they had done.
The Monroe Elementary staff really cares for their students. Mrs. Hagelberger, Andrew’s first grade teacher, continues to correspond with her 1st grade graduate. Mrs. Allen, his second grade teacher has kept Andrew in touch with his class through phone calls and letters. She has also visited my son in the hospital to brighten his day and catch him up on the goings on in school. Mrs. Kopacz, the lunch lady, continues to write wonderful notes. Many guest book entries come from staff and students of the Monroe Community. Feels good.
When you move to a community you naturally ask about how good the schools are. Monroe Elementary has done an excellent job educating children (which is apparent in their standardized test scores) but they go well beyond that. They teach kids to care for one another and respect one another. The Monroe community has rallied around our family in crisis and has done the same for other families in need.
I want to say something to the local school district community whether you have kids or not. I am very proud to work for our school district. Our family is well immersed in this community for ten years and feels fortunate to have our kids in this school system. I am continually impressed with the talent of the staff and the depth of how much they care for kids.
Now I am going to jump up on my soapbox and talk about something else that has weighed heavily on the thoughts of our family. Sorry this is less about Andrew's illness and more about OUR children.
Now more then ever is the time for this community to rally around Monroe and the Anoka-Hennepin School District of which it is apart. Anoka-Hennepin ISD #11 is in a funding crisis. Last year Anoka-Hennepin cut $16 million by cutting programs and services. They increased class size to the largest in the metro area and increased fees for activities like sports to the highest in the metro area. Free bus service was eliminated to 17,000 students. Of the 345 school districts in Minnesota, Anoka-Hennepin is ranked among the 6 lowest in administrative expenditures per student. 93% of Minnesota school districts receive more general education dollars than Anoka-Hennepin. Soon the school district will be asking the local voters to approve money to support the schools. If the request is turned down an additional $28 million will be cut!
What does that mean? If the levy is voted down five communities like Monroe Elementary will loose their local schools. This is not an idle threat. The school board has gone on record to implement the closing of four elementary schools and one middle school. Class size will go up and school attendance boundaries will change for a large number of students. This is not good. This is very bad.
If you don’t have children in school think of it this way. Your home has been the safest investment over the past few years. What will your home value be worth in a school district in crisis? What do you think a realtor will say to a prospective buyer when asked about the schools in your neighborhood? Additional excellent information is available on the district’s web site www.anoka.k12.mn.us. Find out why schools like Monroe Elementary with great kids and terrific staff are in trouble. Then Vote YES to the school levy on November 5.
Monroe and Anoka-Hennepin ISD #11 is in crisis. I know economic times are tough but public schools have the same number of kids in good times and bad. They haven’t forgotten my family in our time of need and we can’t forget schools in their time of need. Tom
Tuesday, October 08, 2002 at 10:58 PM (CDT)
Andrew is home and won’t start chemo number six until next Monday. Dr. Bostrom wants him to rest up and heal. I want to get after the cancer. Until now Andrew hasn’t missed a beat with any of his treatments so a week reprieve is not a failure. He is nauseated right now and may be that way for a day or two. Andrew has not eaten in eight days. Mom took Andrew for walks to the end of the street. If the vomiting does not stop by Wednesday the doctor will want to see him. The pathologist report indicated that the tumor had dead cells, mature (harmless) cells and active cells. Overall the doctor was “pleased” with everything. That lifted a weight from my mind. Haven’t slept more than four hours a night this week.
Visited with my dad at Hillcrest Nursing Home. He is recovering from a couple of surgeries but looks good and is getting around well. He wishes he had had the defibulator years ago. Seems to help with evening out his breathing. He is having some trouble with his leg that is nerve related. Physical therapy should help improve the leg somewhat. Watched about half the Twins game with him and his roommate Forrest. Evidently the game was not that exciting for Forrest. Seems like a nice man when he’s awake. I have to get tips on sleeping from Forrest.
Monroe Elementary is having a penny drop fundraiser to contribute to CARINGBRIDGE the web site that makes my updates all possible. The kids have had a great time making and decorating a life size Sponge Bob and this whole week kids can bring in pennies to put in Bob. Andrew was Sponge Bob last Halloween and is a big fan of the Sponge man. Thanks to all at Monroe for their efforts. Tom
Saturday, October 05, 2002 at 10:28 AM (CDT)
This is the beginning of a new day
God has given me this day to use as I will
I can waste it or use it for good
What I do today is important because I’m exchanging
A day of my life for it
When tomorrow comes this day will be gone forever
Leaving something I have traded for it
I want it to be gain not loss; good not evil;
Success not failure, in order that I shall
Not regret the price I paid for it
Because the future is just a whole string of nows
-Anonymous
My high school and college teammates recited this in unison before each football game. Credit Coach Sullivan with knowing that life is more than sports and how you live each day is important.
The bottom line question is "Did they get it all?". Not likely. That is why we have more chemo, radiation and meds to go.
While this has been the most difficult week for Andrew, so far, we have to count the little progress he makes each day as positive. Recapping the week. The surgery was on Tuesday. The 8” incision was in his abdomen and in the same spot as his biopsy. The surgery seemed to take longer than anticipated but there were issues with the epidural that were not serious but they take every precaution. With any abdominal surgery the digestive functions shut down. Until they start to function again his only nourishment is from IV fluids. His last meal was Monday and he can’t have H2O by mouth. The epidural line is in the middle of his back and “baths” the nerves with medication to take away pain from that point down. The epidural has fewer side effects than other painkillers like morphine. Mom had one each for the delivery of Nick and Emily. When Ang had the first one inserted in her back for Nick I nearly passed out. I digress.
They monitor Andrew's respiration, heart, oxygen efficiency, stomach fluid output, as well as other “outputs”. Several wires and tubes carry information and “outputs”. The most annoying tube is the NG. Nasal-Gastro Tube. Runs down the nose to the stomach to pull out fluids that build up. The stomach secretes digestive fluids that move through the body. Until his system moves those fluids through his system naturally he cannot have the tube removed. They listen for stomach growling and watch for “output”. He increases his movement each day, which will help with getting everything inside moving again. Since things have not been happening as fast as they anticipated they were concerned yesterday with breathing and the lack of growling so they x-rayed for pneumonia and obstructions. Happy to report both were negative.
I have been up to the hospital each day and Grandpa, Grandma, Beck and Melis have each stopped to lend support but Ang is visibly worn. She came home for a few hours on Thursday and will do the same today for shower, clothes and time away. I spell her for a while but Andrew looks to his mom for real comfort. Mom has a way of taking away the fear and discomfort I could never equal. I talked to Ang this morning and last night was a rough one. The surgeon and oncologist have been in to check. Another x-ray. Two bowel movements in the past twelve hours has been reason to celebrate but he is still nauseated and stomach fluids are not moving yet.
The three of us had a nice evening together last night. Disney had a new movie on that Andrew was eager to see. Melis had brought sandwiches the previous day and mom was very hungry. Grandpa and Grandma held down the home front and took Emily to hockey. People continue to send cards and little gifts to raise his/our spirits. A pancake breakfast benefit has been planned at our church. I will post the ad on this homepage. If you would like to lend a hand we are looking for volunteers to work two-hour shifts. Thrivent Financial (formally Lutheran Brotherhood) has generously matched donations. Information came from Make-a-Wish Foundation this week. They want to meet Andrew. A “Thank You” doesn’t seem sufficient to all the people that carry us. Tom
Tuesday, October 01, 2002 at 03:57 PM (CDT)
It's out and everything went well. Long morning. The surgeon came out around 12:30 pm. The turmor was large and still active. We knew that. The blood vessels did not show on the CT scan as he had to disconnect large ones. That we did not anticipate. Lost a lot of blood and required two units. He is up in the room now and resting. Several tubes coming out now from all over. Don’t know what it all means right now but at least it is out. He is floating in and out of consciousness and cranky as ever. That is a good sign as he seems to have no time for hospitals or pain. This is his first pain meds since the biopsy in June. We will most likely know more as the week goes by but if I know the doctors they tend not to speculate. Keep up the prayers that the continued treatments will knock this thing out. Tom
Monday, September 30, 2002 at 09:46 PM (CDT)
Surgery at 8:15 a.m. in the morning. They want us there at 7:00 a.m.
The weekend was full. We want it that way when Andrew is feeling well. Went out to eat at Applebee’s Friday night (Andrew ordered the “chicken popcorn shrimp” – his words not mine), hung out at Aunt Becky’s on Saturday and took in the Twins game on Sunday. Stopped by the hospital to see my father. He had a second surgery tonight for some type of pacemaker device. Regulates the heart similar to a pacemaker. Mom called and he seems to be doing o.k. Sore.
Sunday morning Nick played the piano during the offering at church. Pachelbel’s Canon in D. He did a nice job. Have to say I am very proud of him. Need to say that more often to him when he isn’t driving me nuts. (The last two sentances apply to Nick and my dad).
Clinic visit today for a pre-op physical. Everything looks good for tomorrow’s surgery.
The Justice League (chemotherapy) has a new crime fighter. The surgeon, Dr. Roback, secretly masks himself as the bold caballero, Zorro. Normally the Mexican freedom fighter protects his people from the wrath of evil revolutionary bandits. Today the Swashbuckler has ridden into town to remove the cowardly Tumor Man and take vengeance for his crime.
Revenge is an act of passion; vengeance of justice. Injuries are revenged; crimes are avenged. -- Samuel Johnson
Extreme remedies are very appropriate for extreme diseases. – Hippocrates
In war there is no prize for runner-up. -- Omar N. Bradley
For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you. Isaiah 41:13
Let’s Roll. – Flight 93
Wednesday, September 25, 2002 at 09:05 PM (CDT)
Today was a very good day. Awesome Andrew has come through again.
Busy clinic week. Monday mom took Andrew for his clinic visit. Reds and platelets were very low. Had to stay for a transfusion of both. Tuesday he had the radioactive dye injected for the MIBG scans on Wednesday and Thursday. The tumor “soaks” up the dye so that it can be detected on the MIBG scans. Today was the first MIBG and a CT scan.
I had mentioned how the bone scans scare me and these tests are no better. The technicians do this all day long. They sit “poker” faced as the scans appear on the screen. I look at their face and hang on their every word. I want to say, “What do you see? Is it good? Is the cancer gone? Give me thumbs up; something; anything…
One technician keeps calling him Sweetie. “O.K. Sweetie, hop up here.” “You have to stay still Sweetie.” “Would you like a sticker, Sweetie.” ArgHHHHHHHHH. His name is ANDREW…”A”…”N”…”D”…”R”…”E”…”W”…. Not Sweetie. Not Andy. Not Drew. Just ANDREW. Look at the damn chart. He has a name. Karp, Andrew Thomas.
Sweetie was not an option in the 1994 edition of the Baby Name Book. The technician means well. Radiology is booked solid every day with kids just like Andrew. Easier to call all of the patients Sweetie. It’s easy to get numb to all the kids. That’s the shame in all of this. The kids just keep coming. Radiology. Oncology. Hematology. Whatever-ology. Too many sick kids.
I did say this was a very good day didn’t I? I was on pins and needles most of the day. That’s probably why the Sweetie name thing rubbed me the wrong way. Then Dr. Bostrom called us at home tonight. Everything looks very good for surgery! He said the tumor has shrunk (size of a fist) and there appears to be no major blood vessels feeding the tumor. Easier for the surgeon (Dr. Roback) to remove Tumor Man. Surgery for the removal of the tumor is scheduled for October 1st.
Pack 581 had their first meeting tonight. Mom got the patches sewn on his uniform during the scans today so he could attend the Pack meeting. I went to the meeting. Andrew decided to stay home and rest. The Cub Scouts in Andrew’s Den were asking about him.
Prayers for my father who is recovering from hip surgery this week. Tom
Wednesday, September 18, 2002 at 06:20 PM (CDT)
He is low on magnesium and phosphorous (more meds to correct this) but the blood counts nine days out from the beginning of round five are good. Reds 8.4 Whites 2500 Platelets 46,000 ANC 2225. Some tears when the doctor explained to Andrew about the tube he would have after the surgery. The tube will run from his nose down to his stomach to remove fluids for a few days after surgery because his stomach will not be working as it should.
I am having a hard time concentrating/writing with Emily tap dancing in the kitchen with her new tap shoes. Mom's turn...
Hi - it's Ang. I guess it’s my turn to add to the website. I doubt my entry will be as entertaining as Tom’s. This is more of my feelings and thoughts – but as far as a daily update - I’m sure that Andrew has flashed one of his famous smiles today – he always does!
It has been an overwhelming few months to say the least. We began this journey feeling numb, sad and helpless. I remember the first few days were so terrible because we learned one bad thing after another – a mass, a tumor, neuroblastoma, it’s in the marrow, it’s spread to his bones – the chemo will be very hard for his little body to endure, and 20 years ago, children did not survive this cancer. One of my first thoughts was that “I’m the mom. I should be able to make Andrew better.” But I cannot make the cancer go away. For our first two weeks when we were in the hospital, Tom would enter information onto Andrew’s website and bring me the guest book entries several times a day. I would cry because I was so overwhelmed with the messages people sent. People we know, and people we don’t know; Friends of friends, and friends of relatives; co-workers and friends from church. Everyone’s prayers and well wishes and thoughts touched us so very much. But it didn’t end there… Andrew received gifts, and cards from so many. People thought of Nick and Emily and Tom and me. I would like to send a thank you note to each and everyone that has sent something or done something – but I lost track of that so long ago. So although it seems inadequate, – THANK YOU to each and every one of you for all that you have done for our family!! The loving concern that so many people have shown our family is humbling.
People ask how I am doing. There is no choice. I must be strong for Andrew, Nick, Emily and Tom. I have always believed that God only gives you what you can handle. That is really a scary thought to me. I don’t want to be able to handle any more than this… My heart aches for what used to be normal for our family. Many times in my life I have thought how blessed I am. I have a wonderful husband, beautiful healthy children, a family that loves us and supports us – and so many friends. I STILL BELIEVE there is so much good in our lives…this has been tough, but think of all the praying that is being done – because of one little boy! Andrew wasn’t “planned” but I think God had a plan from the start! Tom and I realized back in June that God gave Andrew so much energy because He knew Andrew would need it when he was 7.
When this first started I was talking to the doctor. I told him that if I were sick, I would fight to get better because I have a husband and children who need me – what would make Andrew fight? He told me that Andrew would fight because he’ll know his mom and dad want him to get better. One day I said to Andrew, “Promise me you will always work really hard to get better.” And he said to me, “I always do Mom.” This child has brought so much joy to me - I can have only hope each day and believe that his surviving will be the miracle I ask for each day.
Back in June, the hospital chaplain gave me a Bible called the “Encouragement Bible.” Every page has extra thoughts and it highlights many verses that help when you are hurting. One that I have highlighted and read over and over is:
“For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.” Isaiah 41:13
Our family has asked God to hold Andrew and Nick and Emily and Tom and me all in His hands. We must have faith and hope – there is no other choice.
We will never be able to thank everyone who has touched our family or helped us in some way – but we thank God for all of you.
Tuesday, September 17, 2002 at 05:27 PM (CDT)
Andrew returned to school on Monday. Clinic visit on Wednesday to monitor his progress. Tom
Saturday, September 14, 2002 at 10:39 AM (CDT)
Mrs. Allen’s 2nd Grade class called the hospital to talk to Andrew this week. “Hi”…”Hi”…”Hi Cole”…”Hi”…”Hi Miles”…”Hi”…”Hi”…”Hi A.J.”…”Hi”…”Hi”. I can imagine all the seven year olds lined up for the phone. The class made get well cards. Mom read them all to Andrew. Lots of smiles.
Andrew came home from the hospital yesterday. He and mom are worn out. The anti-nausea medication seems to make him sick. Go figure. Ang stopped giving it to him and now he feels fine. This morning he is starting to eat and is surprisingly doing very, very well! The sparkle is back in his eyes. They weighed him on Thursday night and he has actually gained 4 lbs from June 10th. The nurse was amazed. Andrew wanted to come home Thursday night but the nurse practitioner wanted him to stay one more night and continue fluids and watch for infection. He had been shivering earlier in the week, which may mean an infection even in the absence of fever. Tests for infection came back negative.
The home nurse stopped out to give us a new pump and IV fluids. Giving IV fluids at home is a new one for us. He got a drip for 10 hours of dextrose and sodium chloride last night. He won’t need the IV if he starts drinking fluids today. Andrew slept very well last night. He was given instructions from Nurse Mom to call for her if he needed her in the night. Despite this directive, in the middle of the night he unplugged the pump, carried the IV bag, pump and battery pack into our bedroom. Nature called.
“I have to go”.
“Why didn’t you call me?”
“I didn’t want to wake up Nick and Emily.”
Before bed mom was ready to collapse so I sent her to bed and read a story to Bearcub. Huggly Goes To School. Huggly is a three-toed monster with two monster friends, Booter and Grubble. They decide to play hide and seek in the local elementary school. Monsters can only enter the people person world underneath a bed, of course. They enter the school under the nurse’s bed. Madcap craziness ensues as Principal Parley assigns the “new students” to Mrs. Coburn’s class.
Closed circuit to all elementary teachers: check to see if any of your students only have three toes.
Closed circuit to middle school teachers: no need to check, they’re all monsters :)
Andrew enjoys stories as all our kids really enjoy reading and being read to. Mom reads each night to the kids and dad does the “made up” stories. Usually the made up story involves three kids (Nick, Emily and Andrew), three wishes, an island, a horse, and some magical something or another. My kids don’t know it yet but my imagination plagiarizes from The Black Stallion, Bewitched, Gilligan’s Island and, I Dream of Jeanie reruns. As long as no one watches T.V. Land or Nickelodeon they think dad is a regular Garrison Keillor.
Read to your kids tonight, you both will enjoy. Dad
Tuesday, September 10, 2002 at 10:13 PM (CDT)
It has been three months since that fateful day. I remember where I was twelve months ago on September 11th and I remember where I was three months ago when the doctor told us of Andrew’s cancer. Ang took our son to the doctor for a fever June 10th. June 11th he was diagnosed. Today they did a bone scan and he was clean! Tumor man is reeling. The war is not over. Nothing is certain but; today we drop down and thank god for our blessings. Keep praying for Andrew.
We didn’t know that the bone test would be this week until we checked in. The bone scan is scary for me. They secure his head and strap his feet to keep him still. He lies there while they run an x-ray type machine above and then below him. The test takes an hour. While you’re in the room a computer screen keeps refreshing while a skeleton appears. It’s Andrew. Fascinating technology if you’re not a parent or the one on the table. It scares the heck out of me. Not knowing what it "shows" yet it is right in front of me. Andrew takes it in stride. He gets to watch a video the whole time. Today the bone scan was something for the “Good Things” journal mom keeps.
A teacher stops by each day while Andrew is in the hospital. Her name is Pam and she works with several of the kids one on one to help them keep up with their schooling. The first day she said, “you are a very good reader”. The second day she decided Andrew’s vocabulary word for the day was “gregarious”. Seems like a big word for a 2nd grader but after two days with Andrew she felt the descriptor fit him just fine. Tom
Sunday, September 08, 2002 at 04:04 PM (CDT)
Packed a lot into the weekend. Out to eat on Friday. Nick’s hockey game. Mall of America and Camp Snoopy on Saturday. Andrew loved the bumper cars and the Little Shaver roller coaster. He also got to hug Snoopy. Big smiles all day. Today was Rally Day at church and lots of chores at home. Andrew goes in tomorrow morning for round five of chemo. This is similar to round three where partial hearing loss can result. Jackson, the two year old that we see at Children’s, will need hearing aids because of this chemo. All our kids have selective listening but this chemo actually can affect hearing.
Sounds like a benefit at Monroe Elementary is in the works. I will keep people posted. Monday Ang will come home in the evening from the hospital to attend Emily’s first Girl Scout meeting of the year. Andrew’s Pack leader called me to check to see if I wanted to be a den leader again this year. Andrew will still be a scout but I don’t think I’ll be able to commit the time this year. We have a rough stretch coming up over the next few months. Chemo, Surgery, Tests, Chemo, Tough Chemo, Stem Cell Rescue, Radiation, Tests. The hockey association said Andrew could be on a hockey team (more in spirit than participation) this year. Who knows he has amazed us so far he could be ready for the playoffs! Everyone has been very supportive. Thanks. Tom
Wednesday, September 04, 2002 at 09:18 PM (CDT)
First day of school. Andrew made it! The nurse came over on Labor Day to check his blood counts and gave us the thumbs up. If you recall Andrew was sick the last week of school in June and felt well enough to go to the last day of 1st grade. Four days later he was diagnosed. Four chemo treatments, numerous medications, bone scans, radioactive dye, CT scans, bone marrow biopsies, surgery, long hospital stays and several tough days this summer and he made it to the first day of 2nd grade. It wasn’t a goal as much as a wish. “What I Did On My Summer Vacation” takes on a new meaning.
June 6th Andrew started piano lessons. Tonight he played The Muffin Man and Yankee Doodle flawlessly. He is doing very well right now.
T.V. news crew showed up at a local elementary school on the first day of school. “Concerned” citizens tipped the media off to “wasteful” spending in the local school district. Fact is this school is 40 years old and in need of a new roof, upgrades in fire sprinkler protection, handicap student accessibility and energy saving lighting. Slow news day.
I’m on a role, don’t stop me………….Why renovate a 40 year old school when we could put money towards building a new sports stadium for rich baseball players and owners? Priorities. Better yet, let's re-open the Governor’s Mansion a.k.a. Tyrell’s Den of Iniquity. Priorities. Even better, let's buy the Governor a jet ski so he can promote tourism. One more. Let's increase Jesse's travel budget so he can go to New York and L.A. to promote.... Jesse. Priorities.
Quiz Time.
1) Quickly…name the starting pitching rotation for the World Champion 1991 Twins? (I’ll give you Jack Morris).
2) Now…name your elementary school teachers?
Times up…I remembered the teachers.
Bumper Sticker: If you can read this…. Thank a teacher.
A famous American when asked about her life’s accomplishments and what really matters, she put things in perspective this way. “If you bungle raising your children, I don't think whatever else you do matters very much.”
Shame on those “concerned” citizens. Shame on the media. Shame on the Governor. Shame on all of us if we “bungle” the education of our kids. Tom
Thursday, August 29, 2002 at 06:17 PM (CDT)
Back in the hospital. Got home from work tonight and Ang was on the phone with the doctor. Andrew is running a fever and we have been admitted to the 8th floor to check for infection. Most likely the doc says we will go home tomorrow if things check out well. We have Dr. Nelson tonight. Great guy. Grandma and Grandpa M had come over today to cook a turkey on the grill. They sent some dinner with us to have tonight. Andrew's color is pale, he has some mouth sores and transfusions may be likely before we go home. Quite a difference from the boy that woke up this morning wrestling with the dog.
Ang took all the kids to open house at the school on Wednesday. Andrew put all his school supplies in his desk and is ready for 2nd grade. Andrew has Ms. Allen. She seems very nice. Hope to bounce back from this fever for the first day of school. Ms. Kopacz (the lunch lady extrordinaire) was excited to see him as well. Tom
Sunday, August 25, 2002 at 06:27 PM (CDT)
He is still doing well. We had several hockey and soccer games this weekend. Em's team came in third place and won a trophey. It was hot out so Andrew only attended one game. His coloring is good so we all went to church this morning. He helped me with chores around the house while mom went to hockey and soccer. We will have to be careful of crowds and germs the rest of this week. Tends to get pale if his counts are low. My dad's birthday is tomorrow and a gathering at my folks in the evening. Next clinic visit is on Tuesday. Hopefully, the first week of school will be a good week and the counts will be up enough for Andrew to attend school, meet his teacher and the kids. That would make all of us very happy. Tom
Thursday, August 22, 2002 at 10:12 PM (CDT)
He's home again. Very spunky at the hospital and again tonight. The nurse practitioner, Dawn, was very impressed with our boy once again. He was riding the hallways in a small tractor. Mom could hardly keep pace with the pumps and chemo tree. He truly is awesome. Tom
Wednesday, August 21, 2002 at 07:27 PM (CDT)
The weekend was very nice. We stayed at the Gibson’s cabin Saturday and Sunday. Josh is a good bud of Andrew's. Josh and Andrew have played hockey together, same first grade class with Mrs. H and the same Cub Scout Den. Gibson’s oldest, Hannah, was on the same girls hockey team with Em and in Nick’s fifth grade class. The weekend brought no phone, sports or T.V. for two days and my children survived. Andrew enjoyed digging in the sand, paddling the paddleboat, playing in the water (about to his knees) and driving the pontoon. Sat out under the stars on Saturday night with a bon fire. Smores. Hot dogs. West Nile. With his blood counts up Andrew could just enjoy being a kid. Mark’s Mai Tais (plural??) on the beach definitely earned him a merit badge. We all had a wonderful time. Thank you to Mark, Jen and the kids.
Monday we started the chemo routine (I think I can call it a routine now). Déjà vu all over again. Mom is at the hospital and I have the big kids. Nick and Em both have soccer playoffs and Nick starts a fall hockey league. Hockey already! We have been up to the hospital each night. Nick and Em had appointments today at the hospital to help them work through their feelings. Andrew has been in good spirits. Mom got up at 5:00 A.M. to buy Krispy Kremes for the clinic personnel on Monday morning. Jackson’s mom did the same thing. Brilliant minds think alike. Andrew was very excited to bring the doughnuts. He will get chemo continuously Monday-Thursday. He is remarkable in his ability to cope with pain and discomfort. I have to keep telling myself that the chemo is a good thing. Justice League. Better living through chemicals.
I have to say we have been getting many inspirational guest book entries and e-mails. I get several emails sent to us personally that never show up for the public on the website. Letters or just quick notes written to Ang or myself lift us up. Thanks. Feldstein’s brought over Garfield the Cat’s favorite dinner tonight (who can name it?). We are saving it for tomorrow to celebrate Andrew’s return home. Looks very tasty. Tom
Thursday, August 15, 2002 at 10:13 PM (CDT)
Mom and Em went school shopping. Nick had a soccer game tonight. We all went together to the game. A little chilly out there tonight again. Andrew is doing remarkable well again today. I called the doctor tonight because I could see the catheter tube in his neck like a bulging vein. This was not visible before and I can feel it just under the skin. The doctor on call tonight did not seem concerned. She offered some possible explanations.
We have been invited to a friend's cabin for the weekend. The cabin is a short distance from our house so we won’t be far from medical care.
Our oncologist, Dr. Bostrom, had mentioned that Andrew is eligible for the Make a Wish Foundation. That hit me hard. Eight years ago I got together with friends to start a non-profit organization. Our mission was to raise money for different children’s charities. I was on the committee that interviewed several children’s charities to see which organization we would contribute our earnings. Make a Wish was one of the charities under consideration. Believe it or not Children’s Hospitals was another of the charities I interviewed (eventually we chose and raised several thousand dollars for the Boy’s and Girl’s Club of Minneapolis).
“Make-a-Wish is for children who don’t survive. What are you telling me?”
Dr. Bostrom went on to say MAW has made changes over the years and now they offer wishes for “life threatening” illnesses where, in some cases, children do survive. Didn’t make me feel all that much better. But at least he was giving us a chance.
I thought of MAW because of the cabin trip this weekend. I wouldn’t want to go very far away from the hospital while he is in this condition. The most requested wish is Disney World (next is to meet a celebrity). How do you take a child undergoing treatment to Florida? We live on pins and needles and need the security of our hospital and clinic. Just like the call I made this evening about the catheter. Maybe when Andrew shows no evidence of cancer we could go on a long family trip. Knowing Andrew his wish might be a year’s supply of bacon, ketchup and toast. Just my luck. He looks and feels well. Round four of chemo starts on Monday. Keep praying for us. Tom
Wednesday, August 14, 2002 at 06:00 AM (CDT)
Nick is back from camp. First time the five of us have all slept under one roof in a while. It was a good day. Tom
Monday, August 12, 2002 at 10:29 PM (CDT)
Mr. Personality is back. By mid morning Awesome Andrew had the 8th floor in stitches. Counts were up (ANC 1212) and he was ready to go home. He convinced mom to make tacos for dinner tonight. Once he secured that commitment he proceeded to invite the hospital staff over for dinner. “Come on over, we’re having tacos”. After mom tactfully explained to Andrew that we can’t have them over for dinner he broke the news to the staff. “My mom says you can’t come over for dinner.” Mom and Andrew compromised and bought Whoppers and Nestle Crunch for the staff. Before he was discharged he reminded Dr. Steve of the Krispy Kremes he owes him and mentioned to Kenny, the nurses assistant, that the pancakes weren’t very good this morning. This evening has been a feeding frenzy for Andrew. Like a family vacation, everything revolves around food and the next meal.
Caution: Cancer patient on appetite stimulant. Keep your hands away from his mouth.
We went to Em’s soccer game tonight. The evening was cool and we all bundled up. The doctor encouraged us to get Andrew outside because outside air is better for him as long as he isn’t in crowds. The “Fire Balls” won 2-1. At 10-years-old, Emily already exhibits signs her parents embarrass her. Maybe my rainbow wig, face paint and cheers are too much. (Watermelon, Watermelon, Watermelon, Rind. Look at the scoreboard...see who’s behind. You, You...You, You, You).* Can’t wait until the playoffs.
Nurse Mom is changing the dressing on the catheter tonight, which is done once a week. After my last entry I have to say the staff at Children’s Hospital is top notch despite our frustrations this weekend. They took us seriously and did a formal interview with Ang about the problems we had over the weekend. They do take their commitment to patients seriously and listened to our issues. Once they got rolling with the proper treatment they stabilized him and made our son healthy enough to come home. Yes, Bear Cub, this looks like a good week. They do miracles at MCH. Tom
*Cheer courtesy of Todd Hanson. Fellow "Dirty-Thirty" Super Fan and Jock-ette Dance Line Captain. Long story. Best told over a few cold ones.
Sunday, August 11, 2002 at 11:01 PM (CDT)
Yesterday started well but the chemo has finally caught up with Andrew. He had a nosebleed that started Saturday afternoon at 2:00 P.M. The bleeding finally stopped at 3:30 A.M. the next day. In between those 13-1/2 hours no child should have to endure. Blood counts were way down. What started out as a simple trip to the Short Stay Unit for a blood transfusion turned into one of Andrew’s toughest days. Transfusions. Negative reactions to transfusions. Anti-biotics. Allergic reactions to anti-biotics. Complete exhaustion. Panic. No doctors. Short Stay Unit. Moved to ER Unit. Moved to hospital room. Andrew was nearly delirious last night. He was so tired. He didn’t cry. He is so tough. We cry for him.
Kleenex had to be under his gushing nose for 15 seconds and then another to replace the soaked one. As the blood filled his stomach eventually it had to come up. There was a lot of blood. Try that for hours on end and see how well you hold up. Mom had had enough. When the nurse delivered the 9:00 p.m. news that we had to wait another hour for platelets all decorum was thrown right out the window. After seven hours of watching her bear cub bleed the mother bear let the entire 8th floor know that from now on things would happen stat. It did. Finally we had two doctors (oncologist and an ear, nose and throat specialist) and platelets stat.
Despite everything Andrew is doing extremely well today. He has had three transfusions of red blood cells and a couple of transfusions of platelets. He has slept most of the night and day and he is remarkably looking 100% better. He has snarfed down mac and cheese, Dunk-a-Roos, Oreos, and a bacon, ketchup, toast sandwich. Nosebleeds unfortunately may stay with us because they take over a week to truly heal and we don’t give him much time in between chemo treatments to recover.
We always talk to him about his “good” weeks. The weeks when his blood counts have recovered and we can go out and have fun. He asked today if this was going to be one of his “good” weeks and how long before he had to come back to the hospital. Kids always hold you to your word. If you don’t come through on your word they remind you by saying, “You said….”. It breaks your heart that you can’t guarantee him a “good” week anymore but you can guarantee that you will be back in a week for more chemo. Tom
Thursday, August 08, 2002 at 10:18 PM (CDT)
Andrew’s clinic visit on Wed. went well. His ANC was over 2600. Anything under 200 we worry about infection and his ability to fight it off. The day before we were concerned because he got a nosebleed that went on for over 15 minutes. We were moments from heading to the hospital when it stopped. Nurse said it was most likely from low platelets. Mrs. H, Andrew’s first grade teacher, stopped by the house today. She taught both our boys. She has been keeping up with the progress of her former student. Here are some excerpts from Andrew’s 1st grade report card….
Andrew is a competent, confident child. Andrew participated in all class activities. His work was well done but not always completed in a timely manner. Andrew has many friends and treats others with respect. Andrew’s printing is good. However, he does not always do his best printing at other times. Andrew’s research report on dinosaurs was well done. He has become a very fluent, expressive reader. He uses sound and word meanings to figure out new words in a sentence. He has also started to add interesting details to sentences. He has a good understanding of numbers from 0-100 being able to describe, compare, sequence, and show them in more than one way. Andrew has had a very successful year in first grade.
Thanks Mrs. H. He is well prepared for 2nd grade.
Mom and the kids have always prayed every night before bed. Here is their prayer.
Dear Jesus, look down from above and fill my little heart with love. Bless me every single day and make me kind and good always. Amen.
Then each one says individual prayers. You may borrow it if you like. Tom
Tuesday, August 06, 2002 at 10:28 AM (CDT)
Andrew is doing well. Clinic visit tomorrow to get a doctor’s opinion.
Nick is off to church camp in Montana and the Absaroka Beartooth Wilderness. It’s near Bozeman, MT. Big trip for a 12-year-old but, he is ready. Mom dropped him off at the bus this morning. She handled sending him off to camp for the first time without tears. Been enough of that this summer. Hugs and kisses were exchanged out of sight of the other campers. Nick will be gone eight days. He is a good kid and knows right from wrong. He will represent himself well.
Emily has had a good weekend. She went to Valley Fair with her friend Alaina yesterday. Cindy Kopacz took Emily and Madilyn out to lunch and SHOPPING today. Emily has several articles of clothing on hold at the store. She explained to me that she has to have these clothes. “Dad, they are on hold and you have to pick them up within 24 hours. Noooo other jeans fit me”. I guess Peace on Earth, the sun coming up tomorrow and the end to World Hunger cannot be achieved unless I make it to the clothing store within 24 hours. Dad will pick them up.
Sunday I went to the annual pool party at Carol and Toby Hieb’s. Nice to see everyone, Billy, Todd, Camel, Terry, Webs, spouses and kids. Mr. Weber was there. Chuck Weber is Steve’s (Webs) dad. He coached the neighborhood boys in several sports when I was growing up. Now that I coach my kids I admire and appreciate him even more. He coached average athletes with well above average “personalities”. How he put up with us I’ll never know. He had the patience of a saint. I still have in my office the one and only trophy we won. 1980 Baseball League Champs. We always had fun no matter what our record.
Mr. Weber (always Mr. Weber to me) has cancer. When I heard he was battling cancer this past year I froze. I wanted to pick up the phone. I wanted to say my thoughts and prayers were with him. They were/are. I didn’t call. Cancer makes people uncomfortable. Major illnesses tend to keep some people away. Some people stay away from Andrew and our family. I understand. I was guilty of the same thing. That used to be me. I won’t do it again. People want to be treated the same. They/We need to hear from you even if you don’t know what to say. Tom
Saturday, August 03, 2002 at 02:59 PM (CDT)
Relay for Life was wonderful. Over 1000 luminaries lined the track and $10,000 raised for cancer research. Andrew’s team alone raised $2,600! I can’t thank Andrew’s team enough. The Monroe Elementary kids included Jill Pontinen (Andrew shared a locker with her in first grade), Jacob Stordahl (Cub Scout) and sister Sydney, Colin Hortman (Cub Scout) and his sister, Danny Sievers (first grade buddy) and their parents and siblings. They all stayed up late and had a party tent complete with food and prizes. The kids decorated over 100 bags, raised funds and walked all night in honor of Andrew. Andrew could not make it. “Mom, I want to go to my bed”. Next year. We did have some visitors at the Relay…Becky and the kids, my co-worker Sheila and her husband Ken, Shelley Lysdahl, Cindy and Paul Kopacz. Ang came for a short time to say thanks while Auntie Melissa stayed with Andrew. Sure I am missing someone. Thanks to all.
Andrew is gradually coming out of his roller coaster nausea today. His spirit is up. We have been able to get several smiles. In the hospital that was almost impossible. He also has had his first bites of food since Tuesday. Toast. Can’t tell you how good two bites of toast can make his mom and dad feel. He must be feeling better. As I write this I can hear him upstairs singing to the Sponge Bob show. Thankfully, the Sponge Bob theme song is not a permanent side affect of the chemo.
Please continue to pray for Andrew and others in their war on cancer. Tom
Friday, August 02, 2002 at 06:27 PM (CDT)
We came home from the hospital this morning. Grandma and Grandpa are helping around the house. Cable 12 news crew was by today to interview us and meet with the scouts and friends that will be on Awesome Andrew’s Relay for Life team this evening. Over 20 people will walk for Andrew and the cause. The Relay is at Champlin Park High School field (same field Andrew will play football on when he’s in high school). The relay raises funds for cancer research. There are over 100 luminaries for Andrew. Lisa Stordahl who organized the team says bring lawn chairs, bug spray and Kleenex.
Andrew has not been feeling well on this chemo. Soon it will be two days without food. Nurse practitioner was not as concerned about food as fluids right now. Andrew has slept more but when he is awake he is nauseated. One doctor told mom this week that these two drugs are some of the worst in terms of nausea. Andrew has a broken blood vessel in his left eye from the heaving. The nausea will pass with time. Other side affects of the chemo include partial permanent loss of hearing (selective hearing has plagued all our children), secondary cancers, organ damage among others. .
Right now The Justice League is having a knock down drag out fight inside his body. Here I take issue. How often do you hear about someone’s courageous fight with cancer? We don’t fight cancer. Fight is not a strong enough word. Andrew had to declare war. Our family is at war. With war you have several battles and casualties. Andrew has life long battle scars on his body. Chemo is friendly fire. Casualties may result. Each family member has wounds. We are working on healing the unseen wounds. This week family members have had appointments with a physician, a psychologist and a social worker. All this M*A*S*H unit was missing was Father Francis John Patrick Mulcahy and Radar. Each day is a battle in an uncertain war and once we “declared” there was no going back. War is hell. Tom
Tuesday, July 30, 2002 at 09:54 PM (CDT)
Day two of the third round of chemotherapy. Andrew had several family visitors today. Grandma and Grandpa M. Ang’s cousin Katie and her three kids. And of course Nick, Em and I. Andrew seemed to be doing well tonight but he looked worn out. Appetite is o.k. The therapy goes well into the night and the nurses have to continually check vital signs and have him go to the bathroom every 90 minutes during the night. He gets a lot of fluids IV to flush/protect his bladder. Mom stays at the hospital as always and she looks tired as well. Hope to get out of the hospital late Thursday or Friday and see the kids at the Relay for Life at Champlin Park. Short journal entry tonight. Everyone needs some sleep. Tom
Monday, July 29, 2002 at 04:02 PM (CDT)
The weekend went well. Friday night we saw Stuart Little 2. Later in the evening we were on Lake Minnetonka with Todd and Nan. Mac’s brother John chauffeured us around the lake until late. All the kids were able to drive the boat. Saturday A.M. Andrew’s buddy Jackson was over to play. Later in the day we went on a picnic with the Jennissens and Walshes. We went to French Park on Medicine Lake (appropriate name for a lake in this situation). It was raining cats and dogs when we arrived at the park and it looked like the picnic was a washout. Katie later called the rain a “gully washer”. I think mom willed the weather to clear up. As we sat in the parking lot in the rainstorm the entire park emptied out. The sun came out after a half-hour of rain and it was a beautiful evening for a picnic. Practically had the park to ourselves. Patti and Katie brought all the food and drinks. Wouldn’t let us bring a thing.
Katie and Dan went through trying times when their first born. Brian was born several months early. Lots of hospital time and surgery. Brian is now 14 (years and shoe size). Brian has a genuine curiosity and politeness about him. He asked me when I found out about Andrew if it was the worst day of my life? Yes.
Sunday we went to the contemporary service at Lord of Life in Ramsey. Ang's sister Becky and family attend LOL. They had a service for the healing of the sick for Andrew afterwards. Very moving. We then went on to Becky's for a picnic with Ang's cousin and her family in from Texas. Celebrated Grandma M's 49th birthday. Always a fun time with all of them when we get together. Leave it to Chris to give Andrew a large box of 16,000 fire crackers. Illegal of course. If anyone asks, the rumbling in the late afternoon North of Anoka was thunder.
Today we had a full day at the hospital. We arrived early for blood tests, bone scan and CT scan. The doctor just left our room and the good news is the tumor is much smaller and the bones have almost cleared. The Justice League has Tumor Man on the ropes. This afternoon we begin a third round of Chemotherapy. The fight isn’t over. More good news came from the original pathologist report on the tumor. Too complicated to go into right now but it was encouraging for any future reoccurrence if we can get over our current hurdle.
Want to pass along this email I got from one of the Dads in our Scout Den. His son Jacob is walking in the Relay for Life at Champlin Park High this Friday night…
Hi Tom! That's fine, Cable12 can call. The SunPost may do a story also. You should see the bags with Andrew's name on them! Jacob has sold many- in fact he has raised over $250 on his own. My wife made signs for the kids that
are walking for Andrew that they will wear on their backs that night. They have a picture of Andrew and they say "Awesome Andrew's Team" "I'm Walking
In Honor of my Friend Andrew".
I hope you can make it out to the luminary ceremony next Friday night. It is at 9 p.m. at Champlin Park football stadium. Just to see the bags, all lit up, with the names of those that have died or are living with cancer is
Inspirational and incredibly moving.
Keep up your strength and courage. I cannot imagine what you are going through but hope you know there are many out here that care. Greg Stordahl
Gstordahl@aol.com
Thursday, July 25, 2002 at 09:39 PM (CDT)
The patient is resting. Will need about 16 hours of sleep a day. We have a special diet for the next month. New medication needs to be taken twice a day and will have little or no side effects. Nothing to worry about at this time. Doctor says the condition is common. Control of the bladder seems to be better on the medication. At least we aren’t finding spots on the carpet. We have to limit table scraps. Nose is still wet. Molly, our Bichon Frise, seems to have a bladder infection. Grandpa took her to the veterinarian yesterday while we were at the hospital. Do they make Depends for dogs? Doggie Depends and Andrew’s Spinner Bait…. If only I hadn’t slept through Marketing 101 in college.
Sorry if I left people hanging. After a very long day at the hospital we got the good news. Awesome Andrew did it again. They needed a minimum of 5 million stem cells out of his blood and he was able to give 7 million! I guess that the procedure normally requires a transfusion of red cells after the process. His hemoglobin did dip to 7.1 but the doctor and nurse practitioner agreed Andrew could recover on his own. Tumor Man hasn’t got a chance. They sent us home. Prayers worked.
Grandma and Grandpa “M” stayed at our house to watch the kids, clean the house and take Molly to the vet. (If you read the last sentence without the comma between “kids” and “clean” it has a distinctly inaccurate meaning.) Andrew looks great and is only slowed a little from the new catheter incision and bone marrow test from each hip. The bone marrow test can be painful. They put a needle into the bones just above the buttock and draw out a sample of marrow. He has had four bone marrow tests now. He’s a tough kid. No painkillers since the biopsy over a month ago. Tumor Man hasn’t got a chance. Tom
Wednesday, July 24, 2002 at 11:11 AM (CDT)
Wrote the first part of this journal at 2:00 A.M this morning but had trouble with the computer until now.
Big week. Today Andrew goes into the hospital for the harvesting of his stem cells. Stem cells are baby blood cells before they become reds, whites and platelets. Using drugs we administer at home they force them out of the bone marrow where they are born and into the blood stream. There they can filter them out and freeze them. They will be tested and if no cancer is present they will freeze them for later. The importance of the stem cells is that during the seventh chemotherapy (the roughest one) he will have no marrow or blood cells left. Without them he cannot live. He will then get back the stem cells from this weeks procedure so that his body can start to regenerate reds, whites, and platelets. We will give him medication at 4:00 A.M. this morning before we check in at the hospital at 6:00 A.M.
Tash and Steve are in town from England. Momma Tash has taken care of the kids for the past three summers and is very close to Andrew. He sat in her lap during Nick’s soccer game last night. Andrew is sleeping in the soccer jersey the coach sent over. It has his first name on the back. All three of the kids signed up for soccer this summer but Andrew has not had a chance to practice and play. Hopefully, we can get out to cheer on his team one of these evenings. Tom
Now it is late morning on Wednesday. We had arrived this morning after 6:00 A.M. The Catheter was placed in his hip/groin area and they removed some bone marrow from each hip agian to be tested to see the effectiveness of the first two chemo's. We had to hold on to each other in the waiting room again. Right now Andrew is in the room hooked up the the phareses (sp?) machine. Mom is at his side. The woman doing the proceedure is from Memorial Blood Bank and I remember her from the times I would go to Memorial to give platelets for my sister. The machine is the same machine for platelets as it is for the stem cells. The settings change for Andrew's proceedure. The harvest will go until 2:00 P.M. and then the cells go over to the U of M to be tested. If they harvested enough cells Andrew goes home tonight. If not we stay and do it all over again tomorrow. Pray for positive results. Tom
Saturday, July 20, 2002 at 10:24 AM (CDT)
Clinic visit Friday. We expected low counts and transfusions in the short stay clinic. Wow, Andrew’s counts had already bottomed out and he is on his way back up. No transfusions needed. Awesome Andrew has done it all on his own. ANC 288, whites 800, reds 8.0, plates 55,000. He looks great and feels great. We’re goin’ fishin’.
Aunt Becky invited us all up for dinner. Uncle Phil took Nick, Andrew and I out on Norris Lake near St. Francis. Andrew caught a 20 pounder! No kidding. But Phil said we had to leave the anchor in the water. Fisherman humor. Actually, Andrew caught 25 sunnys. Phil caught one bull head, Nick caught a handful of sunnys. Being the self proclaimed best fisherman in the boat, Andrew let us know (more than once) his secret to catching fish.
Andrew's Fishing Tips(With deference to Babe Winkelman).
1. Cast far and deep – use lucky side of the boat.
2. Reel in the bobber – which brings in the whole school of fish.
3. Wait for a bite.
4. Pull in the fish.
5. Have Uncle Phil unhook fish and rebait hook.
6. Easy!
I’m thinking cable show, website, books, tapes, interactive CD, endorsements and Andrew’s Spinner Bait at a store near you. For a couple of hours there was no television, no cancer, no drugs, no hospital, no problems. Just the boys out fishing. Andrew was the top dog and in control. Fishing should be included in all cancer protocols as a “recovery” drug. Especially for kids. Thank you to Phil and Becky. Tom
Wednesday, July 17, 2002 at 09:47 PM (CDT)
Clinic visit went well today. Andrew had his blood drawn and the counts are dropping as expected. The red cells 7.9, white cells 100, platelets 154,000 and ANC 46. Any ANC fewer than 100 we have to be very careful of infection. No visitors or crowds. Next couple of days we have to watch for fever. The nurse practitioner seemed to feel the tumor felt about the same size. We will have some more tests to look at the progress and the stem cell harvest before the next chemo, which is tentatively scheduled for a week from Monday. We have another scheduled clinic visit this Friday and most likely a transfusion. Andrew, Mom and I played crazy eights tonight. I shuttled Nick to baseball practice tonight. Andrew had some real belly laughs as he beat his mom and dad at cards. Ang's friend from General Mills brought over dinner.
Flash ahead 20 years to the future...back from climbing Everest and living life to its fullest Andrew Karp has a very short stint as a Vegas dealer. He’s fired on his first day for dealing crazy eights and laughing at the customers. He moves on to become an oncologist but becomes unemployed because they find a cure. Moves back in with his parents and plays crazy eights each evening.
Andrew wanted me to pass along these jokes…why did the skeleton go to the library? Because he wanted to bone up on a few things. What do cats have for breakfast? Mice Krispies. Tom
Monday, July 15, 2002 at 10:19 PM (CDT)
Is 12 a teenage year? I snapped at Nick tonight. Doorbell rang. Andrew loves to get the door. Andrew proclaimed loudly, “I’ll get it!” Unfortunately, he forgot he was hooked up to his pump and eating his supper at the same time. Milk, potato chips, sloppy Joe, medicine pump came crashing to the floor. Visions of the catheter pulled from his chest. Andrew, knowing more of what is still connected and what is not connected, nervously says, “It’s o.k. Mom. It’s o.k. Mom. I’m sorry, I’m sorry”. He is more worried about us. Tells you something about Andrew. He lifts his shirt and indeed no ER tonight.
As I hurry to clean up the mess the door still needs to be answered, the dog is barking, the dinner table is a mess and the house is not much better. I start cleaning the floor. Mom wants Nick to quickly sit down and eat his supper before baseball practice. Then it came. Surveying the clutter Nick proclaims, “Where should I eat?” It wasn’t the words as much as the tone and situation. Nick struck a nerve with me. I snap. (Nothing physical mind you. Our kids were raised on Time Outs. Nick spent second grade at the dining room chair). My voice booms. Nick sits, holds back tears, and eats dinner. Ang calls the baseball coach to send Nick to baseball. She doesn’t say it but THE LOOK says she wants to send me to the dining room chair. Figures Nick and I need a cooling off period.
Andrew, Mom and I go to Emily’s first soccer game of the season. Missed the first half. Never used to. Ran into one of my favorite hockey families at the soccer field tonight. I always like to see them. They are concerned for Andrew. They keep up with us through the Journal entries. They “check everyday” and find them “informative and humorous”. It’s funny, I don’t feel humorous. This entry was not very informative about Andrew. My apologies to the reader. Now I have to do the same to Nick before he goes to bed. Dad
Saturday, July 13, 2002 at 04:02 PM (CDT)
This weekend things are going great. Mom changed the bandage for the catheter, which needs to be done at least once a week. The Hickman catheter is a small white tube that comes out of the middle of his chest and branches in two. It goes directly to the bloodstream and helps to eliminate poking him every time he needs an injection, blood drawn etc. Saves on all the pokes in the veins that after awhile can be a problem if you have to keep finding new spots over and over again. Heard from Emily who is with Aunt Becky at the cabin. She loves the Wave Runner. Today’s version of a Jet Ski. Emily got a friendship bracelet kit from my sister and has been busy making them for anyone who needs one. Everyone needs one. Cindy Kopacz did the Relay for Life in Brooklyn Center and had a luminary for Andrew. She picked up one of the “Awesome Andrew” hats Em and her friend made to wear on the walk. Some of the Scouts in Andrew’s Den may do the Relay here in Brooklyn Park. Right now Andrew is busy with his Play Station 2 video game. Ms. Pac Man was always my game. One joystick. Up, down, left, right. PS2 has two ANALOG sticks, four directional buttons, an x-button, square button, triangle button, circle button, R1-button, R2-button, L1-button, L2-button…No wonder it carries the WARNING: If you experience dizziness, altered vision, eye or muscle twitches, loss of awareness, disorientation, any involuntary movement or convulsions contact a physician. I don’t play video games but I can identify with some of these symptoms over the past month. Pastor Valerie called this morning. The support group is bringing dinner on Monday night. Also, Bailey, the newborn from our church I mentioned on the 9th, is doing very well. I don’t have all the details but he had five hours of heart surgery this week. The doctors at Children’s perform miracles and I have no doubt that all the prayers are helping both Bailey and Andrew. Andrew’s next clinic visit is Wednesday. Tom
Thursday, July 11, 2002 at 05:20 PM (CDT)
Andrew had a good day on Wednesday. Grandma and Grandpa stayed at the hospital while mom went home to recharge and reload. Emily is going to the famous “Norman’s Cabin” for the weekend with Aunt Becky and family. I will go to Nick’s baseball game tonight. Andrew is finished with two of the chemo drugs and the third will end later this afternoon. If all goes well he will come home tonight! The nurses can’t believe that Andrew has tolerated the chemo this well. He has been pumped with drugs for four straight days, 24 hours a day with little or no adverse side effects. He’s tough. Started skating at 3 yrs old and played hockey three seasons so far. Andrew is not one to cry. Tears roll down his face. No sobbing. Doesn’t go for hugs and kisses. Tumors don’t stand a chance if they are looking for an easy mark. Appetite is strong. We expect the worst affects of the drugs will occur early to midweek next week. Dawn, our nurse practitioner said she could definitely feel the tumor has shrunk. Yes! Heard this morning Springsteen and the E Street Band are back together and coming to St. Paul. Cheep seats are 2 bills each! Times have changed. I’m an easy mark. Barry Hay stopped by last night with Jackson. Jackson has just completed the same protocol that Andrew has begun. Jackson looks great and has his own web site at www.caringbridge/mn/jacksonspage. Barry is very positive. Felt good to talk with him. Few people understand. He does. I want to continue to thank every one for their thoughts and prayers. No way can we get through this alone. Tom
Tuesday, July 09, 2002 at 10:14 PM (CDT)
Second day of second round. Andrew seems to be tolerating the chemo much better this time around. We started him on the anti nausea earlier this time. Jalyn and Andrew seem to have hit it off. They were down to the playroom together when I called from work today. Our Primary, Doctor Bostrom is sick (not sure if that’s paradoxical or ironic). We will include him in our prayers. The nurse practitioner, Dawn, stopped by today to talk to Ang about the stem cell harvest. Once Andrew’s blood counts come up from this chemo session they will insert another catheter near his hip. They will take out his blood, filter out stem cells, and freeze them for later. He will need them after the seventh chemo to rebuild his immune system. More complicated than I described. Pastor Jim stopped by today. A newborn from our church requires surgery at Children’s Hospital. We will include the family in our prayers. Nick had a baseball game tonight. Emily had soccer practice while I went to the hospital. Got help from friends shuttling the big kids. Aunt Becky and Uncle Phil stopped by the hospital with McDonald’s and Burger King for Andrew. Andrew ate some of both. Burger King meal came with a Men In Black squirt toy. Andrew proceeded to soak us all. How long do we have to humor this kid? Uncle Phil did some weird things with a purple hospital glove. Andrew laughed. Andrew was in an especially good mood today. Lots of smiles. He got a baseball bat signed by a minor league baseball team in Colorado Springs. Not sure who sent it. Also received a Robin Yount signed baseball. Not sure who sent that either. Must be some Angels in the Outfield.
Monday, July 08, 2002 at 09:57 PM (CDT)
Second round of chemotherapy started today. The Justice League rides again. Mom and Andrew checked in to the clinic this morning to check vitals before beginning his medicine. Andrew weighed in at 54.4 lbs. Gained nearly 6-1/2 lbs in just over a week. Wow. He has come back nicely. No more ribs. Took the big kids down to the hospital tonight. Andrew wanted us to bring his Lego’s and Dominos Pizza. The 8th floor at Children’s Hospital is very busy tonight. Andrew has a 7 yr old roommate, Jalyn. He has sickle cell anemia and had his gall bladder removed today. Emily and her friend Madilyn have been making and selling hats to the neighborhood with the proceeds going to cancer research. The hats say “Awesome Andrew” on the front and “#1” on the back. Maybe with enough research the 8th floor won’t be so busy in the future. Despite the five lines running to his catheter (three chemo, anti nausea, fluids) Andrew and Nick shot free throws in the children’s play area tonight. Afterwards we all went back and watched the Disney Channel together in his room. Em and I played cards. Spit in the ocean. I will have to practice. Andrew got a large envelope of handmade Get Well cards from Steve and Sharon Weber’s (Webs) VBS. Looks like the kids that made them are about Andrew’s age. Big grin. He was amazed all these kids he didn’t even know made him cards. Jessica is back in the hospital. Please include her in your prayers. Tom
Friday, July 05, 2002 at 05:32 PM (CDT)
Andrew seems to have nearly recovered from the first round of chemo. He seems like any other 7-1/2 yr old today. Only difference is that Andrew always used to have boundless energy. Now he will hit the wall a couple of times a day. “Breakfast” today consisted of a box of Lunchables, Swanson’s Great Start Breakfast (his favorite), waffles and Swiss Cakes. Then they went to Wendy’s for lunch. Mom and the kids ran errands. Michaels Crafts for a silk fern. Plants have been tossed out of the house. Two reasons: Mold isn’t good for Andrew and no one cares for plants in our house except mom. She is busy these days. Nick needed shin guards for his newest sport. Soccer. Andrew proceeded to ride a scooter up and down the aisles at Sportmart. Wiped out! Small bump. Andrew was more concerned that mom was concerned. Right now he is putting together Lego’s at the kitchen table. Before Lego’s, mom cracked the whip on his summer chores. Every summer mom has a daily chore list for each of the kids. We have a notebook, which contains duties for the day. Many are repetitious (make bed, brush teeth, pick up room). Friday means Andrew has to vacuum the stairs (up and down) help fold laundry and practice piano for 20 minutes. Psychologists feel “it is critically important that a normal work routine be resumed as soon as the patient is willing and able to become a useful member of the family unit”. I made that up. Otherwise I might end up vacuuming stairs. Mom has enough on my daily chore list. Kids like chores when they are done. It makes them feel good and Andrew is no different. Grandpa and Grandma “M” are kicking us out of the house tonight. Grandma said Ang and I have to leave the house without the kids. Taking my date out to dinner. Nice break. Tom
Thursday, July 04, 2002 at 02:18 PM (CDT)
Fourth of July. Slept very well last night, thank you. My sister, Pati, and her family stopped over last night. They drove in from Ohio. Nice to see them again. Their oldest is 21 and finishing up college after only 3-1/2 yrs. The middle child just got a full ride soccer scholarship to Michigan. Their youngest may top them all. Pure coincidence my job took us to the same cities as her family (Chicago and Atlanta) during the 1980’s. My brother in law, Pete, cooked us many gourmet meals. They were always generous. Time flys. Andrew had three bacon, ketchup and toast sandwiches before 8:30 am. Then we took him to Perkin’s where he had a full breakfast. Have I mentioned he is on an appetite stimulant? He tends to bruise easily right now and has one on each knee. Also, have to be careful of too much sun. Ang has always slathered the kids with sunscreen. Kids hate it. They will thank her later. Scientists should make a tumor-screen. Andrew wants to go Putt-Putt Golfing and later we will see fireworks. Tom
Wednesday, July 03, 2002 at 07:28 PM (CDT)
Andrew played with Evan most of the day. Lots of energy today. Ate like a horse. He is now sleeping on the couch with dog and remote control. Normally my spot but we all have to make sacrifices. Couldn’t sleep last night. No energy to get up either. Mind spikes in all directions never focusing on anything. Thought a lot about Karen Grant and her 8 yr old son Michael who survived 2-1/2 years of cancer treatment. Until she emailed me I didn’t know she was from Freehold, NJ. (I will now ramble on). While on business in New Jersey I made a pilgrimage to Freehold, New Jersey in 1989. Just before our first was born. Had to find the childhood home of Bruce Springsteen. Anyone who knew me before kids, knows I’m a fan of “The Boss”. In college we all had musical favorites, Shanley loved Chicago, Jamie – James Taylor, Fly – Don McLean, Danny Schnur– The Go Gos (sorry I made that public Dan), my hero was Bruce Springsteen. Buddy of mine since 3rd grade Steven P. Weber, (Webs) got me hooked on the Blue Collar Troubadour at the St. Paul Civic Center in 1980 during “The River” tour. While off to college, my 56 yr old father stood in line one morning at Dayton’s ticket office for tickets to the 1984 “Born in the USA” Concert (now there’s a father’s love). I paid $100 per ticket to a scalper at the Rosemont Horizon outside of Chicago to see 1986 “Nebraska” tour. Had to buy two tickets. I was now a married man. Music helps to mark the years. Springsteen was here a couple of years ago. Didn’t even make the effort to see him. I think his concert date conflicted with Disney on Ice. Our mini van is littered with Brittany, Nsync, Back Street Boyz, and Aaron Carter CD’s. Dad has no say. I wouldn’t have it any other way. Next time in Freehold I think I would look up a new hero of mine that is only 8 yrs old. Tom
Tuesday, July 02, 2002 at 09:49 PM (CDT)
The weather is steamy here in Minnesota and the air quality from forest fires in the West is not good. We kept Andrew inside Monday. Tuesday was his clinic visit. The counts are up and so is Andrew. ANC over 11,000. Even gained a few ounces. His mouth is now feeling better and he has had solid foods. Coming home in the car he told mom he wants to eat Dominos, play with friends, and see Disney’s Lilo and Stitch and much more. Of course he will get anything he wants. I think I would feel guilty any other way. Now doesn’t seem like the time to deny Andrew anything. No regrets. His friend Evan came over tonight. Play Station 2, Super Soakers, Legos, Swing Set, Skate Board. Things 7-1/2 yr olds should be doing. Next Monday he will have a blood test to make sure that his counts came up high enough to start Chemotherapy the same day. Spoke to Karen Grant from NJ for over an hour last night. Her son, Michael, is a five-year survivor of this (I don’t like to say or see the word). They spent 2-1/2 years undergoing treatment. Spent over 420 straight days in one stretch in the hospital. She sent a guestbook entry today. Remarkable woman. Found out no fireworks in Crystal, MN this year. Have to find somewhere else to expectorate Kix.
Sunday, June 30, 2002 at 12:02 PM (CDT)
Sunday. I took the big kids to church. We have been at Faith Lutheran 10 years. Meeting new people all of a sudden. Crisis brings people together. Feels good. I have always felt very comfortable at Faith (and not just during the sermons). Andrew slept through the night. First time in awhile. He had a rough Friday night. The doctor had said that the sore under his tough looked more like a canchor (sp?) sore. Dr. took a swab for a culture test. Lots of tears. Andrew holds his tough still to talk and his voice seems to have gotten squeaky. He told mom he would try a salt-water gargle tomorrow. That was yesterday. Today he told mom he would try a salt-water gargle tomorrow…. Next clinic visit is scheduled for Tuesday. Hopefully, the blood counts start to come up on their own. If all goes well this should be an upswing week. The five of us have always gone to the Crystal Frolics fireworks on the 4th of July. We laugh cause one 4th mom taught the kids how to spit Kix Cereal out the back of the mini van. Distance vs. accuracy is important. I refuse to participate. What would Betty Crocker say? Families build traditions. That is one of ours. We will take things day by day. All plans are tentative. Tom
Friday, June 28, 2002 at 10:45 PM (CDT)
Mom shaved Andrew’s head today. The hair was really bothering him. Andrew had a forced clinic visit today. Another transfusion was required. Blood counts are still low. His appetite is huge but his mouth is too sore. He asked for, but could not eat pizza, BLT and pancakes. So far just high protein, vitamin and mineral drinks can pass the gullet. Our Primary, Dr. Bruce Bostrum, saw Andrew at the clinic today. Ang was glad to see him again. He told Ang the mass (tumor is a dirty word) seemed smaller. No kidding. More good news. They didn’t find an NMYC gene in the bone marrow. As the doctor explains, if the gene is present the tumor has a greater likelihood of returning. For those keeping score tumors that return are a bad thing. The pathologists report from the biopsy will soon tell us for sure if the NMYC gene is present. Andrew got home around 6:30 pm from the 1:30 pm doctor appointment. He’s not in a good mood. Andrew got a toy hamster that sings and dances to “Kung Fu Fighting”. Mom had a belly laugh. Long overdue. I saw someone from my golf league at the grocery store today. I look at his face to see any sign he “KNOWS”. I don’t think he does so I exchange pleasantries and leave it at that. Don’t want to shock people when they ask “Hi, how ya doin’?” “How ‘bout them Twins?” “Been fishin’?” “Ya, you betcha”. “Oh, by the way, my son has cancer”. Stopped by the liquor store today. Saw a hockey mom. She “KNOWS”. Andrew’s story is starting to become so repetitive I rarely become emotional. Shouldn’t I break down every time? Seems everyone has a cancer story. I have two. Tom
Thursday, June 27, 2002 at 09:37 PM (CDT)
Andrew came home today. His counts were no better. Doctor said that because he was not running a fever that he would be sent home. Mixed feelings about this. If his temp spikes we pack up and go right back. He is not having a good evening. Temp has inched up. Doctor wants to see him in the clinic tomorrow unless, of course, we end up in ER tonight. Got the first invoice for meds. You don’t want to know. Very happy we have health insurance. The Karp’s have had the distinct opportunity to sign up for all sorts of new programs and research studies. Because of the type of illness the hospital said we qualify for medical assistance called TEFRA. This is over and above our existing health insurance. TEFRA is a federal program administered by the county. Sounds like trouble already. Where do I sign up? A hospital administrator stopped by yesterday. We also qualify for a research study on chemotherapy patients and their parents. Has to do with the effects of massage on stress levels for both the patient and the parent. Essentially, they massage you then you spit in a cup. Wow. Where do I sign up? Note: from my limited sampling of data, hospital administrators seem to lack a sense of humor. I will continue my observations. The killer study is the “Good Tasting” Glutamine research study funded by a pharmaceutical drug company. Glutamine is normally given to chemotherapy patients to reduce/heal mouth sores. If we signed up for the study Andrew might be in the control group and get a placebo. Thus, live without regular Glutamine in the name of research. He is getting regular Glutamine. Some things you just don’t sign up for. Tom
Thursday, June 27, 2002 at 03:03 AM (CDT)
Can’t sleep. Andrew seemed to bounce back Wednesday after the unit of red blood cells but all the other counts dropped. May need platelets Thursday if those numbers do not rise on their own. His mouth hurts making eating difficult. They gave him morphine. First painkiller in over a week. He is technically in isolation to protect from germs. Mom notices a few hairs beginning to fall out. Hopefully the cancer cells are suffering the same fate as some of his good cells. Tom
Tuesday, June 25, 2002 at 09:04 AM (CDT)
Back in the hospital. Andrew had a great evening before bedtime. Very perky and even chased his sister up the stairs at one point. Family watched the Muppet Movie, Treasure Island, and had lots of laughs. Nick, always the perfectionist, felt compelled to point out the inconsistencies in RLS’s Treasure Island and the Muppet version. Nick needs to relax sometimes – it’s the damn Muppets. Just before bedtime Andrew’s temp seemed a touch high. He was up twice before midnight. No change in temp. Set our alarm for 2:00 am and he was over 102 degrees. Called the doctor and off we went to the ER. Mom had already prepared a bag for herself and one for Andrew. Dads don’t need overnight bags. Danielle our summer nanny had been put on alert and she was there to watch Nick and Emily within 5 minutes. Very lucky to have her watch the kids for the summer. Counts were lower than last journal entry. Always a threat of infection so they started him on antibiotics. He will get a blood transfusion this morning to help with the counts. No visitors please. Doctor stopped in. We have to take it day by day until fever stays down and counts start to come up. No peewee golf lesson today.
Monday, June 24, 2002 at 07:28 PM (CDT)
Andrew’s appetite is back with a vengeance today (pancakes for breakfest, nine chix nuggets for lunch and an O.K. dinner). My prayers were answered. He had only lost three pounds but on Andrew we could always count the ribs. I had a real sick feeling last night when he took off his shirt to get ready for bed. Wish I could give him some of mine. Mom wishes I could give him some of mine as well. Finished reading “Peace Like a River” by Leif Enger about one week before 6-11 (the day Andrew was diagnosed). I won’t give it away but it’s a story of a father who would sacrifice everything for his son. The feeling/need is real, not just Hollywood stuff. Good read. Mom went back to work this morning while grandma and grandpa stayed with the patient. They put in more work around here before 8:00 am than most people do all day. Incredible work ethic. Andrew had his first clinic appointment today. Counts were all down. To be expected but still scary to see them drop dramatically. For those in the know...Hemoglobin 7.3, Platelets 191,000, White Blood Cells 100, % Band zero, Absolute Neutrophil Count (ANC) 15. Doctor was more optimistic about his weight and counts. Said Andrew can go to peewee golf lessons tomorrow if he is feeling well enough. Outside air away from crowds is actually better than inside air. Next clinic visit Thursday. Clinic visits will continue twice a week whenever he is home. Next round of Chemo treatment is scheduled for week of July 8.
Sunday, June 23, 2002 at 08:15 PM (CDT)
Andrew has had two in home nurse visits this weekend. In addition, we have called the Dr. twice. First call for itchy skin and rash. He has had allergic reactions to the dressing for his catheter and possibly the chemo. Benedryl has helped. Second call for a bloody nose. The doctor attributed it to something I call “nose miner” syndrome. Name that movie. My parents stopped over and brought Lunch/Dinner. They want to help anyway they can. Andrew loved the chicken. Earlier today he tried several foods that looked good but once they touched his mouth they were rejected. He says his mouth under his tongue hurts. Mouth sores are common yet not always this early in the process. Ang took our older kids to church this morning. I stayed with a sleeping Andrew. The church has formed a support group for us. Several people also let her know of their thoughts and prayers. I was able to catch up with folding laundry. I don’t actually do laundry. Ang has enough stress right now. Neighbor helped me trim trees today. Another will haul away the branches. Another helped drop off the kids at summer school. Another brought Krispy Kremes. I don’t even know them. Many other random acts…. People have come out of the woodwork. Tough accepting help for routine things. Sure helps to remove a brick off your back though. Tom
Saturday, June 22, 2002 at 10:45 AM (CDT)
We came home yesterday. Andrew’s appetite is still not what we would like but hopefully when he gets home he can have some of his favorites. His head seems to itch. He says he has to get the sand out. Ang washed his hair in the kitchen sink like she always did for our babies. The itching didn’t go away. Tingling can be a side affect of the chemo. Ang ran some errands this morning. Emily is going on the Jonathan Paddleford Boat Trip in Saint Paul with the Girl Scouts. I feel the need to put a life vest on her. Came home with an entire pharmacy from the hospital. The in home nurse stops by this afternoon. Mandatory visit. I think she checks more on the parents, procedures and home life more than the patient. Just a guess. No Osbourne’s here. Andrew slept well last night and even got up once by himself for a #1. Most one’s and two’s happen with little fan fair. Around here it’s a celebration. MIBG scan results were relayed to us through the nurse. Never did see a doctor yesterday. Little frustrated about that. Nurse said, “MIBG scan was consistent with the bone scan.” I guess I have to interpret that as good. By nature I want to be a “Prairie-Home-Companion Minnesotan” but advocacy for your child can turn you into a New Yorker (that’s a good thing). Talked with Tom Shanley (college roommate, friend, pediatrician at Cincinnati Children’s) He confirmed that we are in excellent hands at Minneapolis Children’s. That took some of the edge off my frustration. Doctor friend of his from residency at U of Chicago studies neuroblastoma treatment full time. He has contacted him for input. Tom
Thursday, June 20, 2002 at 10:06 PM (CDT)
I know, I know...it's PILOTS not PIOTS. See last journal entry. What a difference a day makes in Andrew. He had much more energy today. He finished the first round of chemotherapy. Andrew’s Chemo is a seven round fight. No new news on the second MIBG scan. He had a little bit to eat and even managed some chocolate shake with his medicine. We don’t hide the medication in the shake. Andrew is way to perceptive for that. Jessica stopped by today. She is a survivor of neuroblastoma. I didn’t get to meet her. Ang said she is a beautiful little girl, outside and in. Mom changed the dressing today. It will have to be changed at least once a week for the next several months. I was the co-pilot and I nodded off during the mission. This week sleep and emotions come whenever they want. Andrew may come home tomorrow and with that comes a whole new meaning to “did you wash your hands?” We ask that friends and neighbors make front door visits for at least a week. Our family has to sort out the new “normal” around here. He won’t become the boy in the bubble but, don’t be offended if our friends from the CDC ask you a few questions in the lobby. Sterile Tom
Thursday, June 20, 2002 at 06:20 PM (CDT)
COPY OF A MESSAGE SENT TO USAF PIOTS ACROSS THE WORLD FROM LT. COL. KEITH R. POND, FRIEND AND CLASSMATE OF ANG AND MINE.
Subject: Please pray for my friends...
Greetings, all.
I apologize for the mass mailing but I felt the need was urgent. The
seven-year-old son of two good high school friends has been diagnosed with
stage 4 neuroblastoma. He had been running a fever and during a visit to
the doctor, the lump in his abdomen was discovered. Were the prognosis
optimistic, I would not trouble you.
I have included a photograph of the family. Tom & Angie (dad & mom) are
my friends. Andrew, their seven year old, is in the center. Nick and
Emily, his siblings, are flanking. I have also included a web-site set up
specifically for Andrew.
Please, even now, take a moment to lift their family before our Lord's
throne. Thanks for your time.
Keith R. Pond, Lt Col, USAF
97th FTS "Devilcats" Flight Operations Officer, AT-38
DSN 736-8417
1 Cor 4:13
KEITH THEN SENT THIS MESSAGE TO OUR HOME…….
Tom & Angie,
I don't know if this would be encouraging to Andrew at all, but fighter
pilots across our nation and across the seas are going into spiritual combat
on their knees on his behalf. F-16 pilots...F-15 pilots...A-10
pilots...Stealth Fighter pilots.
One of the credos that we have as fighter pilots is the essential nature of
"mutual support". You never cross the line alone. Someone is always with
you, checking your six...those areas of vulnerability that you cannot see
yourself (your six o'clock position). To that end, Andrew has mutual
support from two-star generals down to brand new second lieutenants to the
backbone of the military, the sergeants. We even have a couple of Navy
guys looking out for him.
Has Andrew ever expressed an interest in "jets?"
Encouragement of the day: "Rejoice in the Lord always. I will say it
again: Rejoice! ... Do not be anxious about anything, BUT in everything, by
prayer and petition, with thanksgiving, present your requests to God. And
the peace of God, which passes all understanding, WILL guard your hearts and
your minds in Christ Jesus." ~Philippians 4:4, 6-7
Keith R. Pond, Lt Col, USAF
97th FTS "Devilcats" Flight Operations Officer, AT-38
DSN 736-8417
1 Cor 4:13
REST ASSURED WITH PEOPLE LIKE KEITH IN OUR ARMED FORCES OUR COUNTRY IS IN EXCELLENT HANDS. TOM
Wednesday, June 19, 2002 at 11:12 PM (CDT)
Good news today from the first leg of the MIBG scan. No new areas seem to be affected by the cancer. Tomorrow they do another round of the same scan 48 hours after the radioactive dye was injected. Need a miracle two days in a row. Missed some visitors from yesterday. Cub Scout Alec Bottema from Mrs. H’s first grade class and his mom. The Hewitt’s, Debbie, Reid and baby sitter, Marcia. Griffin and Jeff Roseland, Scout and dad. Nineteen additional visitors today. Big group from GMI and some dear friends. Most notably Tash Fogo (Summer Nanny for the past three years) flew in from England once she heard the news. She had to see “Frank” (as in old blue eyes) her nickname for Andrew. Grandma took over for an exhausted mom today and tended to her grandson. Nothing better than Grandma’s back rubs and the Garfield Cartoons she reads. The body wasn’t interested in much of anything today. No food and little to drink. Nothing is staying down. No pain meds since Sunday. Doesn’t need them. Just feels blah (understatement). Tomorrow they will introduce nutrients I.V. Nick golfed today with the Wood’s (no, not Tiger). Andrew is signed up for lessons at Edinburgh U.S.A. this summer. He had his first lesson the same day they found the tumor. I think a foursome of Emily, Nick, Andrew and dad is in order for Father’s Day 2005.
Tuesday, June 18, 2002 at 05:48 PM (CDT)
Day two of recovery. Andrew has decided that the bed is not where he wants to be so, he has navigated to the couch in the room. It’s a guy thing. Several guests today include my parents, sister and niece Katie. Friend Katie Walsh. The Enzinower’s (neighbors) another Cub Scout from our den, Trent Gall and his dad. Nick and Emily just got here with our summer nanny, Danielle. All three have an appointment with the social worker, Susan. Andrew’s appetite is not there today. Swiss Cakes don’t even look good. Hit the call button. Constipation is a typical concern at this point (again, I’m speaking of Andrew) but he has taken care of business today. Couple of small spit ups. He is very lethargic. If kids visit don’t expect the same old Andrew for awhile. Everyone has been so generous with cards, letters and presents for Andrew. Thank you all. Anoka High custodians took up a collection for a present for Andrew. They so desperately want to help in anyway they could. They generously got him video games. They are Andrew’s favorite. I look around the 8th floor at Children's Hospitals and Clinics and firmly believe that donations to the cause may be the best way to help all the Andrew’s, Ben’s, Johnny’s, Gabbie’s, Ashley’s, Brian’s, Carter's, Cooper's, Mary's, Amy's, Nolan's, Xu's, Peter's, Manuel's, Paul's… (See link on this site). If you think you're having a bad day visit a Children's hospital for a dose of perspective. The Guest Book grows and we do share the ones addressed directly to Andrew with him. Ang and I clutch the others close to our heart. Tom
Monday, June 17, 2002 at 03:42 PM (CDT)
Today the fight began. Chemotherapy is the Justice League (if you don’t have Cartoon Network at this point you are out of your league) and they are fighting the evil villain Tumor Man. Mom came up with that analogy and it is something a seven-year-old can understand. It makes him smile. Right now it is just between he and his mom so, don’t tell anyone. Ang always has a knack for that sort of thing with the kids. One minute after they hooked up the Justice League Andrew declared that “this doesn’t hurt at all”. We went for a wild ride on the bike again when Andrew’s bud Brett stopped by. Pastor Jim visited. He has the incredible ability to cheer Andrew and calm the parents. Finally, felt like checking on things at work. Normal, if it ever comes, has to creep in. My secretary is an angel in disguise. Just don’t cross her, this angel bites. Nick hasn’t gone back to baseball since Andrew has been in the hospital. We have given him the option but he wants to be with his brother. Emily seems good. She can really let it out and then let it go. Looking forward to her teenage years. Missed some people that had come to visit yesturday when we went home unexpectantly . Sorry we missed you. Not sorry we took Andrew home.
Sunday, June 16, 2002 at 04:05 PM (CDT)
Had our consultation today. Feeling more knowledgable about the road ahead but no less at ease. Dr. Bostrom gave us a wonderful Father's Day present...he said Andrew could go home for the afternoon. Right now he is playing with his brother on their new Play Station they bought together last weekend before all this occured. His tummy is still sore but his smile tells me he is glad to be home even if it is only for a few hours. The doctor said he could also go to see Scooby Doo if he would like! You don't have to ask Andrew twice about Scooby. Speaking of dogs, boy's best friend, Molly (our Bischon) was here to greet Andrew. I don't know who was happier. Maybe me. Today was a good day after all. Tomorrow afternoon we start his medication. I have to go. Scooby Movie starts at 4:50 PM. Dad
Sunday, June 16, 2002 at 12:30 AM (CDT)
Just got back from the hospital. Mom is spending the night as she has from the beginning. Andrew was soundly sleeping when I left. He looks perfect. I got the big kids off to bed here at home. Andrew had a great time later in the afternoon. Jackson Richards stopped by with his mom and a soccer ball. They played Nintendo and Jackson really cheered Andrew up. Grandma and Grandpa M were so helpful today. They had Andrew up and around for walks to keep everything working after being in bed so long after the surgery. Mom, Em, Nick and I decided we are starting a "Good Thing" journal to keep with us. Each day we will put down “a good thing” that happened. The good thing of the day was a whoopee cushion. One of Andrew's buds, Evan Wood, and his family brought gag gifts today. Andrew got both mom and dad with the cushion. Even with the incisions Andrew couldn’t keep back the laughs. Leave it to the Wood’s. In the morning Ang and I have a meeting with Dr. Bostrum for more test results and consent forms. God give us strength. As I sit here it has become Father’s Day. Tom PS Hug your kids tight. PSS Maybe I will slip the cushion under the Doctor.
Sunday, June 16, 2002 at 12:30 AM (CDT)
Just got back from the hospital. Mom is spending the night as she has from the beginning. Andrew was soundly sleeping when I left. He looks perfect. I got the big kids off to bed here at home. Andrew had a great time later in the afternoon. Jackson Richards stopped by with his mom and a soccer ball. They played Nintendo and Jackson really cheered Andrew up. Grandma and Grandpa M were so helpful today. They had Andrew up and around for walks to keep everything working after being in bed so long after the surgery. Mom, Em, Nick and I decided we are starting a "Good Thing" journal to keep with us. Each day we will put down “a good thing” that happened. The good thing of the day was a whoopee cushion. One of Andrew's buds, Evan Wood, and his family brought gag gifts today. Andrew got both mom and dad with the cushion. Even with the incisions Andrew couldn’t keep back the laughs. Leave it to the Wood’s. In the morning Ang and I have a meeting with Dr. Bostrum for more test results and consent forms. God give us strength. As I sit here it has become Father’s Day. Tom PS Hug your kids tight. PSS Maybe I will slip the cushion under the Doctor.
Sunday, June 16, 2002 at 12:30 AM (CDT)
Just got back from the hospital. Mom is spending the night as she has from the beginning. Andrew was soundly sleeping when I left. He looks perfect. I got the big kids off to bed here at home. Andrew had a great time later in the afternoon. Jackson Richards stopped by with his mom and a soccer ball. They played Nintendo and Jackson really cheered Andrew up. Grandma and Grandpa M were so helpful today. They had Andrew up and around for walks to keep everything working after being in bed so long after the surgery. Mom, Em, Nick and I decided we are starting a "Good Thing" journal to keep with us. Each day we will put down “a good thing” that happened. The good thing of the day was a whoopee cushion. One of Andrew's buds, Evan Wood, and his family brought gag gifts today. Andrew got both mom and dad with the cushion. Even with the incisions Andrew couldn’t keep back the laughs. Leave it to the Wood’s. In the morning Ang and I have a meeting with Dr. Bostrum for more test results and consent forms. God give us strength. As I sit here it has become Father’s Day. Tom PS Hug your kids tight. PSS Maybe I will slip the cushion under the Doctor.
Sunday, June 16, 2002 at 12:25 AM (CDT)
Just got back from the hospital. Mom is spending the night as she has from the beginning. Andrew was soundly sleeping when I left. He looks perfect. I got the big kids off to bed here at home. Andrew had a great time later in the afternoon. Jackson Richards stopped by with his mom and a soccer ball. They played Nintendo and Jackson really cheered Andrew up. Grandma and Grandpa M were so helpful today. They had Andrew up and around for walks to keep everything working after being in bed so long after the surgery. Mom, Em, Nick and I decided we are starting a "Good Thing" journal to keep with us. Each day we will put down “a good thing” that happened. The good thing of the day was a whoopee cushion. One of Andrew's buds, Evan Wood, and his family brought gag gifts today. Andrew got both mom and dad with the cushion. Even with the incisions Andrew couldn’t keep back the laughs. Leave it to the Wood’s. In the morning Ang and I have a meeting with Dr. Bostrum for more test results and consent forms. God give us strength. As I sit here it has become Father’s Day. Tom
P.S. Hug your kids tight.
P.S.S. Maybe I will slip the cushion under the Doctor.
Sunday, June 16, 2002 at 12:19 AM (CDT)
Just got back from the hospital. Mom is spending the night as she has from the beginning. Andrew was soundly sleeping when I left. He looks perfect. I got the big kids off to bed here at home. Andrew had a great time later in the afternoon. Jackson Richards stopped by with his mom and a soccer ball. They played Nintendo and Jackson really cheered Andrew up. Grandma and Grandpa M were so helpful today. They had Andrew up and around for walks to keep everything working after being in bed so long after the surgery. Mom, Em, Nick and I decided we are starting a "Good Thing" journal to keep with us. Each day we will put down “a good thing” that happened. The good thing of the day was a whoopee cushion. One of Andrew's buds, Evan Wood, and his family brought gag gifts today. Andrew got both mom and dad with the cushion. Even with the incisions Andrew couldn’t keep back the laughs. Leave it to the Wood’s. In the morning Ang and I have a meeting with Dr. Bostrum for more test results and consent forms. God give us strength. As I sit here it has become Father’s Day. Tom
P.S. Hug your kids tight.
P.S.S. Maybe I will slip the cushion under the Doctor.
Sunday, June 16, 2002 at 12:19 AM (CDT)
Just got back from the hospital. Mom is spending the night as she has from the beginning. Andrew was soundly sleeping when I left. He looks perfect. I got the big kids off to bed here at home. Andrew had a great time later in the afternoon. Jackson Richards stopped by with his mom and a soccer ball. They played Nintendo and Jackson really cheered Andrew up. Grandma and Grandpa M were so helpful today. They had Andrew up and around for walks to keep everything working after being in bed so long after the surgery. Mom, Em, Nick and I decided we are starting a "Good Thing" journal to keep with us. Each day we will put down “a good thing” that happened. The good thing of the day was a whoopee cushion. One of Andrew's buds, Evan Wood, and his family brought gag gifts today. Andrew got both mom and dad with the cushion. Even with the incisions Andrew couldn’t keep back the laughs. Leave it to the Wood’s. In the morning Ang and I have a meeting with Dr. Bostrum for more test results and consent forms. God give us strength. As I sit here it has become Father’s Day. Tom
P.S. Hug your kids tight.
P.S.S. Maybe I will slip the cushion under the Doctor.
Sunday, June 16, 2002 at 12:10 AM (CDT)
Just got back from the hospital. Mom is spending the night as she has from the beginning. Andrew was soundly sleeping when I left. He looks perfect. I got the big kids off to bed here at home. Andrew had a great time later in the afternoon. Jackson Richards stopped by with his mom and a soccer ball. They played Nintendo and Jackson really cheered Andrew up. Grandma and Grandpa M were so helpful today. They had Andrew up and around for walks to keep everything working after being in bed so long after the surgery. Mom, Em, Nick and I decided we are starting a "Good Thing" journal to keep with us. Each day we will put down “a good thing” that happened. The good thing of the day was a whoopee cushion. One of Andrew's buds, Evan Wood, and his family brought gag gifts today. Andrew got both mom and dad with the cushion. Even with the incisions Andrew couldn’t keep back the laughs. Leave it to the Wood’s. In the morning Ang and I have a meeting with Dr. Bostrum for more test results and consent forms. God give us strength. As I sit here it has become Father’s Day. Tom
P.S. Hug your kids tight.
P.S.S. Maybe I will slip the cushion under the Doctor.
Sunday, June 16, 2002 at 12:10 AM (CDT)
Just got back from the hospital. Mom is spending the night as she has from the beginning. Andrew was soundly sleeping when I left. He looks perfect. I got the big kids off to bed here at home. Andrew had a great time later in the afternoon. Jackson Richards stopped by with his mom and a soccer ball. They played Nintendo and Jackson really cheered Andrew up. Grandma and Grandpa M were so helpful today. They had Andrew up and around for walks to keep everything working after being in bed so long after the surgery. Mom, Em, Nick and I decided we are starting a "Good Thing" journal to keep with us. Each day we will put down “a good thing” that happened. The good thing of the day was a whoopee cushion. One of Andrew's buds, Evan Wood, and his family brought gag gifts today. Andrew got both mom and dad with the cushion. Even with the incisions Andrew couldn’t keep back the laughs. Leave it to the Wood’s. In the morning Ang and I have a meeting with Dr. Bostrum for more test results and consent forms. God give us strength. As I sit here it has become Father’s Day. Tom
P.S. Hug your kids tight.
P.S.S. Maybe I will slip the cushion under the Doctor.
Saturday, June 15, 2002 at 02:11 PM (CDT)
Andrew is sleeping now. He was able to get out of bed this morning. His nurse Jean and mom had to get him dressed so that he could see his friends that were coming. He has had wonderful visitors today. Some of his best buds Cole, Max and Miles. All terrors from Monroe Elementary's graduating 1st grade. Don't feel bad if he is not too talkative as he has lots of medication to help him. I think the visits take a lot out of him so short ones will be good at this time. That also gives the nurses a break:) Thanks for coming to all the kids. Tom
Friday, June 14, 2002 at 07:08 PM (CDT)
Bear Cub is sleeping now. When he woke from surgery he said, "Mom, I'm alright". When mom cries he hands her Bentley the bear. He has been extremely brave. My parents came today. Aunt Melissa, Aunt Becky, nephew Patrick and fiancé Liddia. Neighbors Andy and Jane. Ang's best friend Pats (Patty Jennison), Mary from my work, and a friend from Ang's work. I might miss people's names that have come by to visit. It is appreciated. Thanks. Tom
Friday, June 14, 2002 at 04:24 PM (CDT)
Good news...the surgical procedure went well. He has now had his biopsy, Hickman cathedra and one more bone marrow test. Several balloons and gifts came rolling in today. He will be out of recovery in one hour and will be sore and groggy. So many calls and emails have been sent. Some of Andrew's Cub Scout buddies are coming over this weekend. Andrew loves to see the kids. I guess that I can only put three pictures on the web site at a time so I will try to keep some and update others. Psychologist stopped by today to introduce herself. They really have a great team and staff here at Children's. Andrew is getting the best of care. I looked into our Doctor's eyes and asked him if it was his child would you change any of the procedure Andrew must endure? He said NO and I believe him. Tom
Friday, June 14, 2002 at 08:00 AM (CDT)
We received some bad news last night from the bone scan. According to the Doctor that was not unexpected from other cases like Andrew's. He has "abnormalities" in four areas (ribs, skull, back and hip). This does not change the treatment so we are proceeding as planned. Monday he starts his medicine and will be at Children's until at least next Friday. Continue the prayers and if you can please visit us. He really perks up when people are around, especially kids.
Thursday, June 13, 2002 at 07:45 PM (CDT)
Lots of people stopped over tonight 6/13/02. Grampa, grandma, Becky, Phil their kids (see photos)Melissa, my brother in-law, Brian, niece Leslie and nephew Rick. Bill Sloan and his family from Ang's work. The support has been wonderful. The posted e-mails, phone calls, thoughts and prayers are keeping us up. Tomorrow the biopsy...Tom
Thursday, June 13, 2002 at 11:49 AM (CDT)
Andrew has been diagnosed with stage 4 neuroblastoma. The last week of first grade he was running a temp but felt well enough to make it to the last day of school. When the fever persisted Angela took him in to see Dr. Rzepka. A lump was discovered in Andrew's abdomen. That was Tuesday June 11. Andrew was admitted to Children's Hospital the same afternoon. Blood tests and a x-ray were done immediately and nothing abnormal was detected. We were hopeful it was just a virus. Andrew’s pediatric oncologist, Dr. Bruce Bostum ordered additional tests for Wed. morning. Bone marrow and CT scan. That afternoon we received the news of Andrew's diagnosis. All within 24 hours.
Andrew will have a bone scan on Thursday, June 13, 2002 at 4:30 PM. On Friday or Saturday he will have a biopsy and will begin chemotherapy the week of June 17. He will remain in the hospital at least until June 21. The treatment will consist of six initial chemotherapy treatments (once per month), harvesting of stem cells, surgery, bone marrow transplant, intensive chemotherapy, radiation and medication. That is what is required for the road to recovery. Please pray for Andrew...
The staff here at Children's are warm and caring so we know he is getting the best of care. We have had several calls of support and visits from family and Pastor Valerie. Visit again...Thank you. Tom
Thursday, June 13, 2002 at 11:25 AM (CDT)
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