|
||||||||||||
Click here to go back to the main page.
Friday, February 6, 2009 6:31 PM CST
I am so bad about updating! Really, there's not been any news lately. This is a good thing! Patrick now only needs blood work, etc every 6 months and he had his appt. at Riley today. It went very well! He hated the needle stick, but was very brave about it (after we asked him to please not kick Ms. Joanne, the phlebotomist). Counts were excellent. His weight is up a little, but he's still in the 11th percentile for weight. He's had a little growth spurt and is now edging toward 50th percentile for height. Getting Pat to eat healthy foods in quantity is still one of my biggest challenges. I think all those months of steroids got him hooked on sweet and salty snacks. At the time, we allowed it b/c that food was better than no food, but now, it's a bad habit we need to break.
Once we finished with the business of a complete physical, Patrick concentrated on the social aspects of the visit. He visited with all his nurses, techs, and the wonderful Dr. Lee. They do like to see how well he's doing. He was so gravely ill 5 years ago and while we remember it like it was yesterday, you'd never know it to look at him. Thank God.
Okay, I am very very proud of Patrick because after clinic he went to the Riley Radiothon and agreed to a brief on-air interview. He was really scared to do it but it turned out fine. He ended up enjoying it. A good life lesson for him--sometimes the things you dread the most can be very rewarding.
A bit belated, but wishing everyone a happy healthy new year.
Thursday, November 27, 2008 2:27 PM CST
Patrick finally decided it is time to update his website. So much has happened in the past year, I will let Patrick take it away.......
We got a dog and named him riley after riley hospital. I'm at Wisconsin because my cousin is in the hospital. She is in Mayo hospital in Minnesota. We just broght her thanksgiving dinner.
I turned 11 on November 7th.
Happy Thanksgiving.
Thursday, November 8, 2007 11:52 AM CST
Finally an update! Patrick turned 10 years old yesterday. How wonderful is that? There was a time I wondered if he would make it to seven and now here he is in the double digits! He woke up with a smile on his face that didn't leave all day. Well, it left briefly when he landed on his shoulder during a game of tackle football, but then he smiled his way through dinner at his current favorite restaurant, "O'Charly's.
This morning his shoulder still hurt and I assumed he just pulled a muscle or injured his rotator cuff, but I called the doc anyway because he starts basketball practice tonight and he has huge plans that cannot be interfered with this weekend.....Going to Green Bay to watch a Packers game! Thank you Aunt Jane & Aunt Kitty!
An X ray shows that he broke his clavicle. The X ray looked really bad to me, but the doctor said it's not that severe and that its a very common injury. Patrick thought it was so cool that he broke his collarbone and didn't cry. He brought the X Ray in to school with him to show his friends. Looks like basketball season will have to be put on hold for Patrick, but he'll still attend practice and games so he'll feel like part of the team.
I should also add that Patrick is no longer going to Riley for monthly check ups....he is now down to once every 3 months.
He is now 14 months off treatment and doing GREAT!
Thanks for checking in.
Sarah
Sunday, August 26, 2007 5:56 PM CDT
Well we got off to a somewhat rocky start to the school year. After an incredibly healthy summer, Patrick came down with a nasty virus which started with a cough last Saturday, then he spiked a fever on Tuesday of 104. He stayed home from School on Wednesday and felt fine for most of the day, so I sent him off on Thursday, which was a mistake. By Friday morning he was such a sick puppy--high fever (105)and coughing so hard he couldnt keep any medicine down. Got him into the doctor and a chest xray confirmed pneumonia. But you know what, since he's not on treatment anymore, it really isn't a big deal. He was just really bummed because he had to stay in all weekend and had to turndown 2 play dates.
Well Katherine is fighting me for the computer now, but I do expect pat to go to school tomorrow.
Tuesday, August 7, 2007 7:38 PM CDT
Patrick and I have decided its time for an update! No news is good news. Due to our vacation and busy clinic schedules, Patrick managed to avoid a July clinic visit. He goes on Friday and then I think we go from once a month to once every 3 months. Wow! He's feeling great and looking great. THis summer has been filled with visiting relatives, a trip to Vegas and the Grand Canyon, swimming lessons, baseball, basketball and lots and lots of Webkinz time. He also went to short overnight camp (48 hours), and kind of liked it. Will he do it next year? He's not sure.
We're really looking forward to seeing our friends at clinic on Friday and have a lunchdate with Dustin!
Less than 2 weeks before school resumes. Yikes!
Love
Patrick
and Sarah
Tuesday, June 5, 2007 8:11 AM CDT
I can’t believe I haven’t updated since April! I’ve sort of been avoiding Caringbridge. 9 months off treatment and I’m starting to let myself believe that things can be normal again and that we can start living without constant worry looming over us. Things get better and better each day for Patrick, but I can’t help but feel guilty because this isn’t the case for too many of our friends. We pray for Steven every day that he can get into remission so they can go to transplant. He relapsed in March and he still is not below 6% blasts. Then I think of Ray and Donovan and Dean who are gone and the hole their absence has left in they’re parent’s lives.
We’d like to put the whole leukemia thing behind us, but it has changed us forever and while we can settle back into our somewhat normal lives, we’ll never completely let our guard down. Nor will we forget the good that has come from all this—the friends we’ve made, the help we’ve received and given to others. Okay, well enough of that and on to the update!
Patrick has had 2 clinic appointments since my last update and both went well. The only issue was that he continued to lose weight –down from 54 pounds before the shingles episode at Easter to 51 pounds on May 25th. He looks like a broomstick—in fact that’s what some of his friends have started calling him. I asked Dr. Lee if we could start an appetite stimulant and she prescribed an antihistamine that also works as an appetite stimulant. So far it seems to be working; he’s been eating much more and looks like he may be edging back up to the mid-50’s. The downside is that it makes him sleepy and somewhat moody. We’ll stick with it for now but I may have to start sliding his meals under his door!
Today is the last day of school. You can imagine how excited the kids were this morning. True to form, Katherine is already gathering school supplies for next year while Patrick is just looking forward to late nights and sleeping in.
Next appointment is June 22nd.
Bye for now.
Thursday, April 26, 2007 3:25 PM CDT
Patrick made it through the night last night without waking up from the pain! He was hurting when he woke up and I gave him a little bit of pain medicine before he left for school. He's home now and said the pain has been tolerable all day. I hope this is a trend! He really is looking forward to spending the night at Dustin's (his buddy from clinic) tomorrow. I mentioned that if his leg was hurting, I didn't think he should go. He said, "Okay, then it's not hurting". I hope he can go tomorrow. He's been talking about it all week.
Tonight is the kids' spring concert at school. All of Katherine's hard work and getting to school a half hour early twice a week comes to fruition. Patrick hasn't made it to any of the practices, but the director is going to let him perform anyway.
Katherine has a soccer tournament in Louisville this weekend (The Derby Cup). GOod luck girls!
Sarah
Tuesday, April 24, 2007 11:48 AM CDT
Well shingles is (are?) no fun at all. Patrick was doing better for a couple of days with tolerable intermittent leg pain, but then he stopped peeing again --he went 16 hours without going! So, the clinic said we should cut him off of the codeine. Last night was his first night off the codeine and he was miserable. He was in and out of sleep and cried off an on all night. I gave him Tylenol and Motrin, but that didn't help much. He's also not eating much which drive me bonkers!
He's home from school today and has slept most of the day. When he's awake, he says his pain is down to a 6 from an 8. At least he's getting some rest. I've heard the pain can last for weeks. We're going on week three, so hopefully there's light at the end of the tunnel.
Okay, nap time for mom!
zzzzzzz
Saturday, April 21, 2007 7:21 PM CDT
Patrick continues to do well. He's feeling better and stronger every day. Unfortunately, he's been trying to do too much and ends up paying for it later. The weather is so nice and he's just chomping at the bit to get out there and play baseball. His WONDERFUL Little League coach (who is also Patrick's good friend's dad) took took the time out to give Patrick some one on one training since Patrick missed the past few practices due to the evil shingles. Patrick learned a lot, but boy, was he wiped out that evening. Then last night bad mom and dad kept Patrick out a little bit too late (you get a fire going in the fire pit and it's all downhill from there...)and he was toast by the time we got him home. His leg hurts him intermittently, but I think thats normal for getting over the shingles. He still is running little teeny baby "fevers", but I think he might just need a dose or two of IV IgG to give his immune system a boost and get him through the rest of the school year. RIght now, he's working on painting a bookmark for Aunt Cindy (his Godmother) who recently lost her dad to glioblastoma. He thought this would be a nice way to cheer her up.
Please pray for our Riley friends, Steve from Munster, Matthew from Fort Wayne and Katey from South Bend.
Thanks for checking in.
Sarah
Tuesday, April 17, 2007 7:38 PM CDT
Patrick went to school today! I stayed home from work because I didn't know how long he'd last, plus I needed to give him his acycilovir and bring him something soothing and special for lunch (milk shake from Steak and Shake). It's really good to have him getting back into the swing of things. He was tearful when he got home from school, but I think he's still tired and he was hot. I thought he was burning with fever until I realized he was still wearing his school shirt, sweatshirt and a jacket in the 70 degree weather (but why won't he wear it when it's COLD out?!). He felt much better after resting on the sofa and playing with his brand new Webkinz (stuffed animal thingie that has a code so you can play an internet game....what will they think of next?). He really is on the mend....actually he's mended! His thrush is almost gone, his rash is scabbed over (lovely imagery) and he's finishing up his antibiotics for the strep.
Thanks for checking in on Patrick.
Sarah
Sunday, April 15, 2007 1:28 PM CDT
Patrick's having an even better day today. He's able to walk with only the slightest limp and has been able to get up and down the stairs. He hasn't had to nap today either. He's starting to get bored, which is also a good sign.
We made a dent in his schoolwork, but have a ways to go.
The only downside today is that Patrick stopped eating again. He's hungry, but it hurts his mouth to eat. Sure enough, he has thrush (yuck!). We're waiting for clinic to call in an Rx for Nystatin. I'm sure that'll do the trick!
His rash is looking much better today, so if he feels this good tomorrow and is able to eat, we'll send him to school.
Thanks for checking in.
Sarah
Saturday, April 14, 2007 12:14 AM CDT
Patrick is starting to feel better! Today, he ate for the first time since lunch on Tuesday--one Dannimals yogurt and some OJ. I ran out to he store to buy all of his favorites. I found some Special K protein water, which I'm hoping he'll like. He was able to stand up today and limp to the potty, but he still can't do stairs. Today is also the first time he's felt up to video games since Sunday. HE's really having a good day today and I'm hoping we can start catching up with schoolwork soon. The shingles is in his dorsal nerve, and the he rash goes from his back down the right side of his butt and all over his shin and calf. It's starting to itch, which means it's healing. Happy for that and to have him feeling so much better!
In other news, it's a cold, rainy day and Katherine is at a soccer game. I'm sure she'll be ready for a hot shower when she come back!
Sarah
Thursday, April 12, 2007 5:15 PM CDT
Update!
SHINGLES! PAtrick's still not too happy and in a lot of pain, but we're thrilled with the diagnosis and hoping the Acyclovir kicks in soon.
Thursday, April 12, 2007 12:21 AM CDT
I am really tired, so I hope this enrty makes sense. Patrick was admitted to Riley thru the ER in the wee hours of the morning. His leg pain got much worse and spread to his back and he couldn't walk or even sit. He was miserable. He also couldnt pee. Everyone in the ER was great. They were very patient with Patrick when inserting his IV (which unfortunately only works to get meds, not to draw blood meaning another needle stick). They let us hold off on inserting a catheter. After 8 hours of hydration and trying, Patrick finally pee'd! Whew! I did not want to put him through another procedure.
He had a 90 minute MRI of the spine which came back perfect. Also an Xray of his abdomen which looked good too. The only concern in addition to his pain is that his platelets are dropping. This is probably due to a virus. Dr. Croop said we could do a bone marrow aspiration to rule out relapse, but I really think it's too soon. We did that in the fall of 2005 when his counts crashed after weeks of fevers and it turned out to be viral (CMV). Did I mention that he tested positive for strep on Tuesday? He never presented with a sore throat or fever, but his throat looked red and he'd been exposed, so Dr. Lee cultured him and sure enough.....positive. I'm wondering if somehow the strep is settled in his leg and back muscles and causing the pain. He's quite doped up right now on morphine and sawing logs. I hope to saw some logs some time here in the next 12-24 hours!
Thanks for checking in and let me know if you have ever heard of strep causing localized muscle pain.
Sarah
Thursday, April 12, 2007 12:21 AM CDT
I am really tired, so I hope this enrty makes sense. Patrick was admitted to Riley thru the ER in the wee hours of the morning. His leg pain got much worse and spread to his back and he couldn't walk or even sit. He was miserable. He also couldnt pee. Everyone in the ER was great. They were very patient with Patrick when inserting his IV (which unfortunately only works to get meds, not to draw blood meaning another needle stick). They let us hold off on inserting a catheter. After 8 hours of hydration and trying, Patrick finally pee'd! Whew! I did not want to put him through another procedure.
He had a 90 minute MRI of the spine which came back perfect. Also an Xray of his abdomen which looked good too. The only concern in addition to his pain is that his platelets are dropping. This is probably due to a virus. Dr. Croop said we could do a bone marrow aspiration to rule out relapse, but I really think it's too soon. We did that in the fall of 2005 when his counts crashed after weeks of fevers and it turned out to be viral (CMV). Did I mention that he tested positive for strep on Tuesday? He never presented with a sore throat or fever, but his throat looked red and he'd been exposed, so Dr. Lee cultured him and sure enough.....positive. I'm wondering if somehow the strep is settled in his leg and back muscles and causing the pain. He's quite doped up right now on morphine and sawing logs. I hope to saw some logs some time here in the next 12-24 hours!
Thanks for checking in and let me know if you have ever heard of strep causing localized muscle pain.
Sarah
Wednesday, April 11, 2007 10:57 AM CDT
UPDATE
Well GOOD NEWS! The strep test came back positive and better news is that they also tested his LDH level yesterday and it came back normal (160 yesterday, 800 at initial diagnosis). If it had been elevated, it could have indicated a relapse. We're breathing a huge sigh of relief! The clinic told me I could give him Motrin AND the Tylenol with codeine to help with the pain, so we'll give that a shot.
Take care!
Sarah
Wednesday, April 11, 2007 8:10 AM CDT
We had a wonderful Easter at my mom's house. Patrick just loves his cousin Sam, and once Sam arrived, the 2 of them disappeared into the basement to play Play Station. We didn't see much of them the entire weekend. They had so much fun together. On the way home, though, Patrick was feeling a little out of sorts. he began complaining that his leg hurt. We figured it was from sitting on it while playing video games. The pain became worse and worse--where it was waking him up in the middle of the night, so I called clinic yesterday. While I was waiting for the nurse to call me back, school called and said KAtherine was sick and needed to be picked up. So, Katherine stayed home while Pat and I went to clinic. No answers on what is causing the leg pain, but as it turns out, Sam had strep throat and Dr. Lee noted that Patrick's throat looked red with drainage, so she cultured it and prescribed amox for him (and she was kind enough to write for Katherine, too). The leg pain was worse last night, so I'll see how he does today and if no improvement, I'll we'll head back to clinic on THursday or Friday. The reassuring thing is that the pain seems muscular and not in the bone and it's only in his right leg, so I tend to think this has nothing to do with his bone marrow. That's what I'm banking on!
Thanks for checking in.
Sarah
Wednesday, April 11, 2007 8:10 AM CDT
We had a wonderful Easter at my mom's house. Patrick just loves his cousin Sam, and once Sam arrived, the 2 of them disappeared into the basement to play Play Station. We didn't see much of them the entire weekend. They had so much fun together. On the way home, though, Patrick was feeling a little out of sorts. he began complaining that his leg hurt. We figured it was from sitting on it while playing video games. The pain became worse and worse--where it was waking him up in the middle of the night, so I called clinic yesterday. While I was waiting for the nurse to call me back, school called and said KAtherine was sick and needed to be picked up. So, Katherine stayed home while Pat and I went to clinic. No answers on what is causing the leg pain, but as it turns out, Sam had strep throat and Dr. Lee noted that Patrick's throat looked red with drainage, so she cultured it and prescribed amox for him (and she was kind enough to write for Katherine, too). The leg pain was worse last night, so I'll see how he does today and if no improvement, I'll we'll head back to clinic on THursday or Friday. The reassuring thing is that the pain seems muscular and not in the bone and it's only in his right leg, so I tend to think this has nothing to do with his bone marrow. That's what I'm banking on!
Thanks for checking in.
Sarah
Tuesday, April 3, 2007 8:09 AM CDT
Tuesday, April 3, 2007 8:09 AM CDT
Hello and Happy Spring!
Another month has passed since Patrick completed his treatment for leukemia. He had his 7 month off treatment check up on Friday, March 30th and it went really well. His counts are all where they should be--his ANC went from 5500 the previous month to 2500 this month, but we think it's because he had a mild infection going on last time (pink eye and an infected cut on his hand)and that can raise your ANC. Dr. Lee was very happy with all the counts. We still need to work on getting Patrick's weight up. He's grown half an inch in recent months but lost a little weight. He is SUCH a picky eater and hardly has an appetite--it almost makes me long for those insatiable days when he was on the prednisone! After clinic we had lunch with Dustin, his mom and sister. Dustin's mom has had a similar experience with him as far as picky eating and we think it has to do with the treatment--the chemo changes the way things taste and you end up totally throwing proper nutrition out the window in order to get your kids to eat anything! We got into some pretty bad habits that are proving hard to break. Patrick and Dustin had so much fun together that we decided to prolong the playdate to a sleepover. The boys had a ball. We played some ball and I learned an important lesson about not trying to play pitcher and outfield at the same time (while wearing sandals)....I am still sore!
Patrick was so sad when we dropped Dustin off the next day. He can't wait to spend the night at his house next month.
The kids were off school last week for Spring Break. Patrick and I just hung around and enjoyed the weather, and lucky Katherine was invited to go skiing with her friend Marissa in Beaver Creek, CO. She had a great time! Now we're all adjusting to early to bed and early to rise again.
Happy Easter Everyone.
Love,
Sarah
Thursday, February 8, 2007 11:32 AM CST
It breaks my heart to write these words. Our friend Dean earned his angel wings last night. I can't imagine the grief his parents and brother are feeling right now. But they are comforted knowing that he is in Heaven and no longer suffering.
I will always cherish the memories of Dean and Patrick playing video games and passing the time in clinic, while I passed the time with his mom and dad. Dean was a special boy and we're honored to have known him.
Please pray for Dean's family as they plan for his services.
Friday, February 2, 2007 4:30 PM CST
Patrick had clinic today for CBC and check-up. His counts are awesome! He did have more difficulty than usual with the blood draw, but I think that was because we only left the EMLA on for 10 minutes-BAD IDEA. He hates putting it on and always procrastinates, but we agreed that next month he'll let me put it on a half hour before the appointment. Our plan was to go visit Dean, who is inpatient, after clinic, but were sidelined by the COLTs party in Riley's atrium. Patrick did a few crafts and might even be on the news this evening! By the time we got up to Dena's room, he was out for a procedure, but we were able to visit with his parents for a bit.
Please pray for Dean and his family. Dean is fighting his 2nd relapse and after a month, has not achieved remission yet.
Also, continued prayers for Donovan's family as they adjust to life without him.
Although I hail from the Windy City, I will say.....
Go COLTS!
Sarah
Monday, January 8, 2007 9:14 PM CST
Hello: I'd just like to ask anyone who checks in this week to think of Ray Newcom who would have turned 8 years old today. Say a prayer for his family--they have been so strong since he left, but I can't even come close to imagining the pain they must feel. Thank goodness for their strong faith which has helped them get through this year. Also for their desire to do good for others--a gift drive to benefit Riley Hospital today and of course, Ray's Sunshine Foundation. Perfectly named after a boy with the sunniest smile and disposition.
Ray's Website is www.caringbridge.org/in/rayspage.
Thanks everyone.
Also, please....prayers for Dean (www.Caringbridge.org/in/deansdetails) and Donovan (www.caringbridge.org/in/babydonovan).
Peace,
Sarah
Saturday, January 6, 2007 12:08 AM CST
Patrick had clinic yesterday for a CBC and check up. He was so brave when they took his blood--he barely flinched. He has come so far from when he used to puke at the sight of a needle! It also helps tremendously that the phlebotomists at Riley are kind, patient and very good at what they do.
Patrick counts were perfect and he's had no complaints, but we still managed to spend about 3 hours at clinic because they were so busy. We got to see Micky D and her mom and brother which was fun. Mickey is such a cutie all decked out in pink. after clinic we made our way up to the peds cardiology floor to visit with baby Anne Therese who was born with a very rare and dangerous tumor on her heart. I got to hold her for a nice long time which was wonderful once I realized that I wasn't going to break her! She is a beautiful baby and a miracle and a gift to the world.
Her story has been in the papers and on the news a lot lately. It's so good to read positive stories about wonderful parents like Ann Therese's esp. after hearing about the local woman charged with neglect after her 3 y.o. son was found running on the highway wearing a t-shirt and dirty diaper. My dad used to say, "Why don't kids you go play in the traffic?", but seriously....
Please continue to pray for Baby Donovan and Dean and their families. Also, remember Ray on January 8th (perhaps a random act of kindness), which would have been his 8th birthday.
Well it's back to Deconstructing Christmas for me. Adios until the next update...
Sarah
Monday, January 1, 2007 10:51 AM CST
Happy New Year!
Patrick's doing great--we enjoyed lots of cousin time over Christmas and just said goodbye to our wonderful friends Rachel, Bill, Maude and Tilly the pup, who stopped in for a couple of days on their way back home to NY. We all stayed up until 12:01 am to ring in the New Year.
Patrick goes to clinic this Friday for a quick blood draw and check up.
Sadly, one of our friends from clinic suffered a relapse last Friday. Visiting with Dean and his family has always been one of the highlights of our trips to clinic. Dean and Patrick share a passion for Star Wars and video games and his parents have been great company for me. This is just terrible news and I'd like to ask for prayers for Dean and his family. Also, please keep up the prayers for Baby Donovan and all the kids & families fighting cancer.
Thanks for checking in.
Sarah
Monday, December 11, 2006 6:03 PM CST
Patrick had clinic on Friday. He went to school until 1:00 pm and then we headed to Riley. He was a little nervous about the needle stick, but the phlebotomist, Joanne, is so nice and patient that it went really well. He said it hurt a little, but he thinks it’s because he forgot to take a deep breath. This is the first time he was able to get the stick without watching as the needle went in. I am really proud of him—he has been such a trooper!
Friday was quite the social day for us. Dean was there with his parents and Dean’s mom came over to say hello with Matthew Vinson’s mom, Nancy, in tow. It was so nice to meet Nancy in person after having known her via cyber space for so long. There 3 of us chatted for quite a while until I realized that perhaps Nurse Susan and Sharon, our NP, might have other things to do than wait on us for Patrick’s exam! It sure did help the time go by—Patrick’s counts were waiting for us in his exam room by the time we moseyed in.
His counts and exam were great. It was exactly 3 years ago last Saturday that Patrick went into fulminant liver failure, and while Sharon was giving him his exam she paused and said, “It’s hard to believe that this is the same kid that was so sick.” I think the same thing all the time. We know how lucky we have been and count our blessings always.
While we’re beyond grateful to have Patrick doing so well, our hearts are very heavy for Donovan (aka Baby Donovan) and his family. Donovan’s 2nd cord blood transplant has failed after 79 days. They could use your prayers and support:
www.caringbridge.org/in/babydonovan
Thanks for stopping in and please leave a message for Patrick in the guestbook—he loves to hear from you.
Love,
Sarah
Tuesday, November 7, 2006 5:34 PM CST
Happy 9th Birthday Patrick!
The first thing Patrick said when I woke him up for school this morning was "Is there something you want to say to me?". I resisted the urge to say "Happy Election Day" and smothered him in birthday hugs and kisses. Not sure how much longer he'll tolerate such overt affection from his mom, so I'll take it while I can get it!
Things are going great. Patrick is feeling full of energy and enjoying his back to normal life to the fullest. We go to clinic for his blood draw on Friday. This will be the first time Since May, 2003 where we can just drop in, give the blood sample and leave. Good thing because we will have lots to do on Friday to get ready for Patrick's birthday party on Saturday. Patrick has asked that his friends bring something for Riley Hospital's Infusion Room instead of gifts (Well, I had to push it a little...but just a little). So,Birthday Party on Saturday and then Patrick and KAtherine will give a piano recital for family and neighbors on Sunday, followed by birthday cake. Then we hope to take a break from sugar for a while.
So, things are great here in the Maxwell household, but we are always thinking of our friends who are going through more difficult times fighting the beast.
Love, Sarah
Friday, October 13, 2006 3:31 PM CDT
Friday the 13th has been a very happy day for us. Patrick had clinic for IV IgG and blood counts and his counts came back spectacular. His white count is up to 5.1, his hemaglobin is 13.1, his ANC is 2000 and his platelets were 168k. Even better news is that today was his last scheduled IV IgG infusion! This means from now on, Patrick can just pop in once a month for blood draws. OF course, we're certainly going to miss the social aspect. Patrick has really been enjoying playing games and talking Star Wars with is friend Dean. We'll miss hanging with the nurses and other kids and their parents, but of course, this is all part of getting back to a normal life....so, we'll take it!
Tomorrow is Riley Hospital's annual Sibling Day. It is one of Katherine's favorite things to do and is a wonderful program. IT is a day just for the siblings of kids with cancer -they play games, learn about cancer treatment, and have fun. I'll drop Katherine off and spend the time with the other parents (probably at a lecture on childhood cancer).
Patrick will go to his soccer game with Coach Daddy.
Tom and I celebrated 15 years of marriage yesterday. He brought home a gorgeous bunch of my fav flower--gerber daisies.
Everyone is healthy and it's been a really good week.
Please keep our friends Dean, Donovan and Brody in your thoughts and prayers. If you have a moment, check their websites out and leave them a message of support.
www.caringbridge.org...
...../in/deansdeatails
...../in/babydonovan
...../visit/brodyblades
Also, feel free to sign Patrick's guestbook--he loves getting messages!
Take Care
Sarah
Friday, September 15, 2006 2:55 PM CDT
Hello: My posts are becoming less and less frequent as life returns to normal in the Maxwell household.
Patrick had clinic today for IV IgG and a CBC. Since he didn't need any chemo, we were able to use EMLA (numbing cream) on his arm and the IV stick was sooooo much easier than the last few times since his port was removed. If all goes according to plan, he'll only have one more IV IgG infusion in about a month (Friday the 13th.... but who's superstitious?)
Patrick's counts were just awesome. I could hardly believe when I saw that his hemaglobin was almost 13 and his ANC was 2900. This is life without chemo. NOTHING on his CBC was outside of normal range!
Well, the IV IgG infusion takes a long time (2-4 hours),so Patrick brought his new PS2 Lego Star Wars II game to pass the time. I didn't realize that there were only a few PS2 game systems in the clinic. Luckily for us, our friend Dean was there in a cubicle with a PS2 system so Patrick and Dean got to play the game and I got to catch up with Dean's parents. THe nurses kind of like being able to to two blood pressures, etc. at the same time-- very efficient!
Time just flew by and I couldn't believe we were ready to leave at 2:00--just in time to pick Katherine up from school. By the time we left the fog we had earlier had lifted and it was the most beautiful day. Nice weather, Patrick is in a great mood, he feels like a million bucks and what more could we ask for?
Patrick met with Ann, the coordinator of Riley's Survivor Clinic and recieved a survivor notebook from the Lance Armstrong LIVESTRONG foundation. It's huge, so I'll look through it later. But how cool, he's now a patient in the Survivor Clinic.
Well, Patrick is calling, so I'll sign off.
Please pray for our friends: For Dean, who is doing great, but still has more than halfway to go on his relapse protocol; for Brody, who was just waking up from a spinal tap as we were leaving; and of course for sweet Baby Donovan in North Carlolina, who just had his 2nd cord blood transplant.
Love, Sarah
Wednesday, August 23, 2006 4:47 PM CDT
Baby Donovan & his family really need our prayers. He's got a tough battle ahead of him but he's a very tough kid.
WWW.Caringbridge.org/in/babydonovan
Wednesday, August 16, 2006 8:18 AM CDT
PATRICK HAD HIS FINAL SPINAL TAP!
Patrick had clinic yesterday for chemo, IV IgG and the last spinal tap of his treatment. He has 40 months of treatment under his belt and is scheduled to stop taking chemo on august 28th. Wow!
His counts were all good yesterday and everything went smoothly. The only problem was sticking Patrick with the IV needle which had to be put in his hand. it was very traumatic for him. No EMLA (numbing cream) because it would alter the way his skin looked and then if something went wrong with the vincristine chemo injection, they wouldn't know it. The good news is that since this was also his last does of IV Vincristine, next month when he goes for his IV IgG, he can get it in his arm and he can use the EMLA.
We had a nice visit with Sweet Aunt Mary-she brought Patrick and KAtherine gifts to celebrate being such troopers for the past 3 years. Visits with Sweet Aunt Mary during clinic have made Patrick's clinic visits so much fun for him. She's great at distracting him from the not so pleasant things that go on up there!
My friend Becky from work came up too, and was there for the little ceremony the nurses put on for Patrick right before we left. They gave him a medal for bravery and a certificate of achievement and sang a song "Happy End of Treatment to You". Becky was also there with me the day Patrick was diagnosed and has been a huge support throughout his treatment, bringing us whatever we needed in clinic and while inpatient, as well as a lot of stuff we didn't need, but certainly appreciated(ike a life size Darth Vader balloon and more goodies than I can remember!).
We've been so lucky throughout Patrick's treatment--so many people(friends, family, neighbors, IHM Parishoners) have come through for us with emotional, practical and prayerful support and we thank you all!
In other news, we just returned from a family trip to Cape Hatteras, NC. I have been going off and on since I was about 5 years old and my kids love it as much as I did as a kid. In addition to my parents and step-parents, we got to see my brother Andrew and my step-siblings from NJ and Cousin Nick. We hardly saw Patrick the whole week because he was always at Nick's house.
This was a great END OF SUMMER trip. Yep, school starts tomorrow. How do the kids feel about this?
"sort of excited"(Katherine) and "sort of scared" (Patrick). I think they'll miss sleeping in until 8:00 every morning, but it will be good to get their brains working again!
Thanks for checking in and feel free to leave a note in Patrick's guest book in honor of his 40 month successful "Battle of the Blasts" (i.e., leukemia cells).
love
sarah
Wednesday, August 16, 2006 8:18 AM CDT
PATRICK HAD HIS FINAL SPINAL TAP!
Patrick had clinic yesterday for chemo, IV IgG and the last spinal tap of his treatment. He has 40 months of treatment under his belt and is scheduled to stop taking chemo on august 28th. Wow!
His counts were all good yesterday and everything went smoothly. The only problem was sticking Patrick with the IV needle which had to be put in his hand. it was very traumatic for him. No EMLA (numbing cream) because it would alter the way his skin looked and then if something went wrong with the vincristine chemo injection, they wouldn't know it. The good news is that since this was also his last does of IV Vincristine, next month when he goes for his IV IgG, he can get it in his arm and he can use the EMLA.
We had a nice visit with Sweet Aunt Mary-she brought Patrick and KAtherine gifts to celebrate being such troopers for the past 3+ years. Visits with Sweet Aunt Mary during clinic have made Patrick's clinic visits so much fun for him. She's great at distracting him from the not so pleasant things that go on up there!
My friend Becky from work came up too, and was there for the little ceremony the nurses put on for Patrick right before we left. They gave him a medal for bravery and a certificate of achievement and sang a song "Happy End of Treatment to You". Becky was also there with me the day Patrick was diagnosed and has been a huge support throughout his treatment, bringing us whatever we needed in clinic and while inpatient, as well as a lot of stuff we didn't need, but certainly appreciated(ike a life size Darth Vader balloon and more goodies than I can remember!).
We've been so lucky throughout Patrick's treatment--so many people(friends, family, neighbors, IHM Parishoners) have come through for us with emotional, practical and prayerful support and we thank you all!
In other news, we just returned from a family trip to Cape Hatteras, NC. I have been going off and on since I was about 5 years old and my kids love it as much as I did as a kid. In addition to my parents and step-parents, we got to see my brother Andrew and my step-siblings from NJ and Cousin Nick. We hardly saw Patrick the whole week because he was always at Nick's house.
This was a great END OF SUMMER trip. Yep, school starts tomorrow. How do the kids feel about this?
"sort of excited"(Katherine) and "sort of scared" (Patrick). I think they'll miss sleeping in until 8:00 every morning, but it will be good to get their brains working again!
Thanks for checking in and feel free to leave a note in Patrick's guest book in honor of his 40 month successful "Battle of the Blasts" (i.e., leukemia cells).
love
sarah
Thursday, July 27, 2006 5:24 PM CDT
A belated update to report that Patrick had a great time at camp and a good clinic appointment last Friday. His favorite thing about camp was archery, the worst thing was that he missed me--but not as much as I missed him!
I picked him up on Friday and had to go straight to clinic. He cried when he realized that clinic meant and IV, but he did really well. Tom and I were prepared to have to hold him down, but he didn't kick or flail at all;he just screamed bloody murder. And WHY is it that kids just have to watch that needle as its going in??? There's just no distracting him.
The rest of his appointment went well. He got his vincristine and IV IgG and his counts were awesome. His ANC was 2100 and the CBC was good. Liver counts, which we had not checked in months, were a bit elevated, but Dr. Lee said not out of the ordinary for a kid on chemo. Believe me, with his history, and knowing how careful she is, if there was any reason to worry, Dr. Lee would be all over it!
We discussed Patrick's final spinal tap, which is scheduled for August 15th and last day of pills which is August 28th. The fact that Patrick is almost done with treatment is becoming real. WOw.
Dr. Lee said they'll probably do a little end of treatment ceremony on the 15th. I'll have to remember my camera. If end of treatment meant end of clinic visits, we would miss Dr. Lee and our friends at Riley terribly, but Patrick will continue to go back once a month for blood draws, so we'll still get to see everyone.
Patrick's been a little less energetic and has some tummy issues since returning from camp, but I think he's still recovering from 5 days of exhausting fun (not to mention romping with his cousins before the week before and the week after camp!).
Thanks for checking in and oh,......DID YOU SEE WHO SIGNED PATRICK'S GUESTBOOK?!?!
While we treasure every entry in his guestbook, having Pete Ward of the Indianapolis Colts sign the guestbook was a real special treat for Patrick. How nice was that?!
Thanks for checking in!
Love
Sarah
Sunday, July 16, 2006 5:40 PM CDT
I just got back from dropping Patrick off at Camp Little Red Door. Wow, 5 nights away from home (5 nights away from my boy...). Today was spent on the road....all day. We were in MAdsion, WI for cousin Emily and Steve's wedding (beautiful) and had to leave bright and early this morning to get Patrick checked in by 4pm.
In MAdison, we also spent a few days with Aunt GInger and family, so the kids truly experienced cousin heaven this week- Maxwells, Bonads, Hughes, and Seerys.
Patrick handled the camp goodbye really well, probably because he was with his buddies Daniel and Dustin. Dustin was very nice and saved bunks for PAtrick and Daniel since they were the last to check in.
Patrick is feeling great. HIs next clinic appt is Friday afternoon right after I pick him up from camp. It will involve and IV needle stick so plug your ears, everyone!
Thanks for checking in!
Maxwells
Thursday, June 29, 2006 6:23 PM CDT
Patrick's port removal surgery on Monday was a breeze. We got there at 7am and were on our way home by 1:00 pm. The folks at Riley Day Surgery were so nice and accomodating. The anesthesiologist allowed Tom to go back to the OR with Patrick until he fell asleep. This helped so much with Patrick's anxiety. The time passed quickly b/c aunt Mary came to visit. When I went back to the recovery room, Patrick was smiling a sleepy smile and asked if we could "go home now". THe nurse said the first time he woke up he was not a happy camper (not uncommon after gen'l anesthesia), she game him a couple doses of morphine and T w/ codeine amd he snoozed a little more and woke up quite refreshed. He was even up to plating with his friend Daniel that evening (video games). He said he feels like the port is still in b/c the dressing is so big. We'll remove the dressing tonight and then it will seem much more real to him. No more worrying about bumping his port. No more accusations of "Katherine hit me in the port" to get her in hot water!
Well the kiddos need dinner. THanks for checking in and sign his guestbook!
Sarah
Sunday, June 25, 2006 5:37 PM CDT
A quick update to let you know that Patrick's surgery is scheduled for first thing tomorrow morning. Patrick is a little nervous, but we've assured him tht he won't feel any pain. He said he will miss his port. It's been part of his body for almost 38 months! We'll miss it too--too bad it started leaking. We won't replace the port, but will complete treatment using peripheral IVs (slight bummer). Patrick and I will report to Riley at 7am tomorrow and the surgery is sched for 8:30. Tom and Katherine will arrive some time before he goes back to the OR. Patrick has been really attached to his dad lately and he has decided that he wants Tom to go back to the OR with him tomorrow. I hope the anesthesiologist allows a parent to go back with him at least until he's asleep. When he had his central line placed in December, they allowed me to go back with him and hold his hand until he was almost alseep. Then a nurse replaced my hand with hers and i had to leave. I really think it helped Patrick cope with the surgery.
Well, tomorrow at this time, Patrick will be port-free.
Bye for now.
Sarah
Sunday, June 25, 2006 5:37 PM CDT
A quick update to let you know that Patrick's surgery is scheduled for first thing tomorrow morning. Patrick is a little nervous, but we've assured him tht he won't feel any pain. He said he will miss his port. It's been part of his body for almost 38 months! We'll miss it too--too bad it started leaking. We won't replace the port, but will complete treatment using peripheral IVs (slight bummer). Patrick and I will report to Riley at 7am tomorrow and the surgery is sched for 8:30. Tom and Katherine will arrive some time before he goes back to the OR. Patrick has been really attached to his dad lately and he has decided that he wants Tom to go back to the OR with him tomorrow. I hope the anesthesiologist allows a parent to go back with him at least until he's asleep. When he had his central line placed in December, they allowed me to go back with him and hold his hand until he was almost alseep. Then a nurse replaced my hand with hers and i had to leave. I really think it helped Patrick cope with the surgery.
Well, tomorrow at this time, Patrick will be port-free.
Bye for now.
Sarah
Sunday, June 18, 2006 2:45 PM CDT
Friday's clinic visit did not go as planned. When they tried flush Patrick port, it infiltrated up high near his clavicle. He freaked out because he remembered our awful experience in the LaGrange Hospital (Illinois) ER where it took 8 hours and several pokes, infiltrations, arm veins and then hand veins to get a blood sample (me too). We gave him some time to calm down and tried again. Same thing. He said the heparin burned and he was afraid his bubble that had formed under his skin would never go away. You could actually see through his skin the part of the line where the problem was. After a long wait, we got into fluoroscopy and we could clearly see that the port line was leaking. After 37 months of honorable service, his port needs to be retired. We have been so lucky—never a problem with his port (the LaGrange thing was due to their inexperience with ALL kids and ports), never an infection. We’re really come to rely on that port and now, with just a few more months of treatment left, we have to have it removed. The thing I can hardly stand is that from now on, Patrick will have to have IVs in his arm. No one likes to see a needle coming at them, and Patrick is no exception. It took 4 nurses to hold him down and he was a mess. I haven’t explained to him that this is going to be the way things are going to be done from now on. Somehow he will have to get used to it, but it’s not going to be easy. The first year off treatment kids have to give monthly blood samples anyway, so he's really just going to get a few more pokes than he would otherwise since he goes off treatment at the end of Augus and his port was scheduled to come out anyway after his last IV IgG infusion in October. It was a long day at Riley--we didn't get out until after 5:30 pm, then we ran over to the Saint Bernadette's festival and saw Dustin's dad, which was nice, but it was so hot and the kids just wanted to go home.
Well, we had a nice Father's day and Grandma and Grandpa are coming over in a bit for dinner.
Thanks for checking in and feel free to leave us any advice on tolerating IVs!
Sarah
Sunday, June 4, 2006 1:40 PM CDT
School's out for summer!!!!
Friday was the last day of school for the kids. You should have head the screams of joy at 1:00 pm on Friday. IT was deafening! I'm taking the next couple of weeks off of work and we have some fun times planned. THis has been a great weekend. PAtrick is so full of energy it amazes me. He had a baseball game last night until 7:30 pm and then wanted to play soccer and basketball. He must take after his dad because he also likes to stay up really late. THis works out great for nights when we have a late dinner, since he needs to wait a couple of hours after eating before taking his medicine.
PAtrick also had a really good report card. I was a little worried about his spelling and am still concerned about his horrendous handwriting, but we're going to work on that this summer with his awesome 2nd grade teacher, Mrs. H.
When you look at Parick now, you would never believe what he's been through and how sick he was in 2003 and last fall. We know how lucky we are and we don't take anything for granted.
Continue your prayers for all the kids fighting this battle, especially Donovan and his family (www.caringbridge.org/in/babydonovan)
Got to take my boy to a birthday party now.
Thanks for checking in!
Wednesday, May 24, 2006 6:01 PM CDT
Patrick had clinic last Friday for a spinal tap with MTX, vincristine in his port and his IV IgG infusion. His counts were awesome--ANC was over 1500 and everything else within normal range. Becky came to visit and brought Patrick the hand held 20 questions game. He loved it and played and played when he wasn't sleeping off the Benedryl and sleepy medicine. It was so nice of Becky to come stay with Patrick , keep me company and stay with him while I ran down to the gift store. Thanks Becky!
The roofers are here now so this is going to have to be a quick update. (This will be our 2nd roof replacement in less than a year thanks Hail Storm of April 2005 and Hail Storm of April 2006). Crazy.
Everything else is just peachy!
Sarah
Monday, May 15, 2006 8:15 PM CDT
Patrick had a great weekend. The weather was awful, which meant no baseball game, but it also meant more PS2 video games. He's got a little cold and his tummy is causing him some discomfort, but nothing to worry about or hold him back. Patrick goes to Riley for a spinal tap on Friday. It should be a long day, but we're hoping for a visit from Sweet Aunt Mary -- she always makes the visits go faster.
Belated Happy Mother's Day to all the moms out there. The kids made me wonderful cards. Patrick's was actually a 10 page book about me :). One of the pages answered the question, "who is the boss in your house?". Patrick's answer: "My mom is the boss at my house, but my dad acts like he is the boss at my house". I LOVE IT!
Take care everyone and thanks for continued prayers for the family of Ray Newcom, and for Baby Donovan and all the kiddos fighting so hard to stay healthy.
Love, Sarah
Monday, May 15, 2006 8:15 PM CDT
Patrick had a great weekend. The weather was awful, which meant no baseball game, but it also meant more PS2 video games. He's got a little cold and his tummy is causing him some discomfort, but nothing to worry about or hold him back. Patrick goes to Riley for a spinal tap on Friday. It should be a long day, but we're hoping for a visit from Sweet Aunt Mary -- she always makes the visits go faster.
Belated Happy Mother's Day to all the moms out there. The kids made me wonderful cards. Patrick's was actually a 10 page book about me :). One of the pages answered the question, "who is the boss in your house?". Patrick's answer: "My mom is the boss at my house, but my dad acts like he is the boss at my house". I LOVE IT!
Take care everyone and thanks for continued prayers for the family of Ray Newcom, and for Baby Donovan and all the kiddos fighting so hard to stay healthy.
Love, Sarah
Wednesday, May 10, 2006 7:33 PM CDT
I’ve been trying to update for almost 2 weeks, but each time I try, I have to stop. I am so sad to report that Ray lost his courageous 21/2 year battle with leukemia on April 29th. He was only 7 years old. As heartbreaking as it is, his family has incredible strength and faith and are at peace that Ray is in a better place now and no longer suffering. As his Grandma Karen said at his visitation, “His life was short, but he sure packed a lot into it”. That was evident by the endless photos of Ray, his memorabilia, and artwork, and the crowd that came out to say goodbye.
Ray’s mom, Christa, writes so beautifully about Ray; please stop by his website and sign his guestbook so they know you’re thinking of them and praying for Ray and their family. www.caringbridge.org/in/rayspage
Patrick is doing very well. He made his First Communion on Saturday, May 6th and then after visiting with relatives, played a little league baseball game. The weather was beautiful. He played again this evening in the steady rain. Yuk!
Patrick goes back to clinic for a spinal tap on the 19th. I believe this will be his 2nd to the last before going off treatment in August.
Thanks for checking in and thank you for your prayers for Patrick, Ray, Baby Donovan and all the brave little warriors.
Sarah
Friday, April 21, 2006 4:05 PM CDT
Patrick had clinic today for chemo and IV IgG. What a great day! His ANC was 1900--That's almost too high! He's turned that corner and is now on 100 hemo (although he was pretty close to 100 efore). He's had a little cold that he passed on to me and Nana. He hardly had symptoms--I'm sure becuase of all the passive antibodies he gets every month through IV IgG. My mom and I had it bad (we're weanies).
Well, Patrick and his buddy are kicking me off of the computer now, so until next time....
Oh, also, Patrick IS going to Camp Little Red Door this summer and today we found out that he only has 2 more spinal taps beforegoing off treatment. I can't believe he's almost done.
I am so thankful...you can't imagine.
Please pray for Baby Donovan in North Carolina and Ray here in Indiana.
Friday, March 31, 2006 8:19 PM CST
Patrick had a great week. Monday, he did have to leave school at about Noon with a headache and tummyache, but after a good lunch and a nice long nap, he felt great. He was so mad at me becuase I wouldn't bring him back to school at 2:15 pm (school's out at 3). He was bored silly at home with me!
He's been great since then. Today was the first day of Spring Break. He had a sitter in the morning and then went to Grandma's and Grandpa's while I was at work. He ambitiously brought along a 500 piece puzzle....we'll see how far they get when he goes back for the day on Monday. Took Patrick and a buddy to see the movie Ice Age 2. I thought it was very cute.
He's upstairs playing PS2 with his friend now and it sounds like they're having a blast. Bedtime in 30 minutes!
Please keep my co-worker, Tonya in your thoughts and prayers. She lost her husband in the Indy Racing League accident in Florida last Sunday. It breaks my heart such a wonderful and loving young couple is now torn apart. I'm praying for strength for Tonya.
Thanks for checking in.
Love
Sarah
Saturday, March 25, 2006 9:06 PM CST
Just a quick update since it's been about a month....Patrick had a great clinic visit yesterday. All of his counts are just where we want them and......he's up to 100% chemo again. First time since October and the whole CMV thing! YAY! PAtrick had been exposed to chicken pox at his school, so he was in an isolation room, but it turns out that since he's getting the IV IgG, we don't have to worry about the CP. They said the passive antibodies in the IV IgG provide more than enough coverage. Whew! Kids at school are still coming down with it, so that;s a relief!
Patrick is doing really well these days. God, how I wish all his friends at Riley and St V's were in the same boat. We're rooting for you guys!
Sarah
Monday, February 27, 2006 2:30 PM CST
Well, I have not been good about updating. This should be taken as a sign that things are going very well for Patrick! As he feels better and better and draws nearer to his off treatment day (8/28/06), we’re able to think less about leukemia and concentrate more on fun activities and getting out to see family and friends.
We spent a great 3 days in frigid Wisconsin over President’s Day Weekend. The kids had a blast! We visited all the Wisconsin aunts and some cousins and uncles too! They especially had fun in the water park of Great Wolf lodge in the Dells.
Patrick had a big clinic day on Friday the 24th. His spinal tap went really well in spite of the fact that he opted for no EMLA. He hates the way the numbing cream feels on his skin. His counts were fantastic and his 6MP is now up to 90%! It was a long day because he also had IV IgG infusion, but it seemed to fly by because we had great visits with Aunt Mary, Becky, and then had a little visit with our friend from clinic, Dean (who is a Star wars fan like Patrick). I was surprised to hear that our friend Steve was inpatient with RSV. Since he’s in isolation, Patrick couldn’t join me, but I was able to fit in a quick visit with him and his mom. If all goes as planned, Steve should now be officially on long term maintenance (after 13 months of very intense chemo)! Way to go Steve!
I spent most of the weekend at our church retreat. Guess what….my family survived without me….hmmmmfff! Patrick was sweet and gave me his 2nd favorite stuffed animal to sleep with.
So, things are really going well for Patrick and we count our many blessings every day. I wish things were going as well for all the kids we know at Riley and St. V’s. Please keep Ray in your thoughts and prayers. His website is www.caringbridge.org/in/rayspage.
Thanks for checking in.
Love,
Sarah
Saturday, February 11, 2006 2:49 PM CST
Thursday Dustin’s mom, Cecelia and I attended the memorial service for Dr. Goldman. Riley did a wonderful job celebrating his life and his contributions. Although Dr. Goldman only saw Patrick a handful of times, he always stopped when we saw him in the halls and would say “Patrick Maxwell, you look great!” Those words were music to my ears and it showed me how much Dr. Goldman cared about every Hematology-Oncology patient. He will be missed.
Patrick had clinic for counts yesterday. Reducing his ganciclovir has done the trick. His ANC was 1500 and all his other counts looked great. IF he holds steady for 2 more weeks, we’ll increase his 6MP to 100%. When he returns to clinic on the 24th, they’ll also do a CMV PCR to make sure the reduced dosage of ganciclovir is keeping the virus at bay. I can tell you that I think it is, because he’s not acting CMV-ish (no fevers, no fatigue).
We had a fun visit with Dustin and our other friend from clinic Steven. Dustin’s website is noted below, but Steve doesn’t have one yet. Steve’s a great kid who was Dx’d with ALL with AML markers. His treatment will be 4 years versus the 38 months most boys with ALL have. I have never seen him grumpy even when he’s feeling like total crap. I admire him and his mom A LOT! Right as we were leaving Riley we ran into another Riley friend, Mickey, who unfortunately is inpatient with fever and neutropenia. She’s another one without a grumpy bone in her body! Still, it’s no fun to be inpatient; you can check out her website and leave her an encouraging message (see below).
That’s all for now. Thanks for checking in.
Love,
Sarah
Sunday, February 5, 2006 4:42 PM CST
Sadly, one of the oncologists at Riley, Dr. Jeffrey Goldman, died on Friday from colon cancer. Dr. Goldman was a wonderful doctor who really cared about all the kids who came to the Hem Onc clinic. Patrick loved it when we'd see Dr. Goldman because he was so creative in getting the kids to cooperate with the physical exam. Basically, he used quarters (even a dollar once for a nasal swab), to distract them. We're very sad and miss him a lot.
Patrick has gone 24 hours with no tummy ache! Knocking on wood! Maybe now that he's off prednisone until the 24th and is only taking one dose of ganciclovir, the tummy aches will be a thing of the past.
Patrick had a pretty full weekend--playing with friends and painting his blessing cup at church in preparation for the First Communion Retreat.
Thanks for checking in and if you pray, please remember Dr. Goldman in your prayers.
Sarah
Tuesday, January 31, 2006 11:33 AM CST
Patrick had clinic on Friday, 1/27 for vincristine, counts and IV IgG. The IV IgG takes a long time to infuse, so he watched two entire episodes of Star Wars, and read most of his book Miss Daisy is Crazy. His counts are still being stubborn, probably due to the ganciclovir, so they decided to reduce his dosage from 30 mls, three times per day to 30 mls one time per day (Yes!!!). Between this and the fact that he’s on prednisone this week, I am very hopeful that when we go back in 2 weeks for counts, his ANC will be right where it needs to be to increase his chemo to 100%. He only has 7 more months of treatment, so we want him to be at 100% as much as possible!
Patrick still gets daily stomach aches and headaches. Not debilitating, but at times bad enough to have to lie down until he feels better. This has been going on since September before he was diagnosed with CMV. It could be that first the CMV was causing the pain, and now its the medicine to suppress the CMV (headache and tummy ache are common side effects). Patrick came home from school with a tummy ache yesterday and I called the phone nurse to request a GI consult, but she said to start keeping a diary of his stomach pain/headaches and if they continue to be a concern, I can address it with Dr. Lee. I’m comfortable with this approach since his pain is not severe.
All in all, things are going well! Thank you for checking in and don’t forget to leave a message for Patrick in his guestbook!
Sunday, January 15, 2006 5:10 PM CST
Just a quick update--Patrick went to clinic on Friday for counts. We were hoping his ANC would be high enough to increase his 6 MP to 100 but he's still a little low. His ANC is holding steady at 1000, which isnt really bad, but not high enough to risk a count crash by increasing his dosages. I imagine that the gancicolvir, which he takes 3 times per day to keep CMV away, is the culprit. In addition to the tummy and head-aches, white count supression is a common side effect. So, we're just going to keep on doing what we've been doing for a while. Patrick continues to look and feel great and we're so thankful to have him back to his old self.
We always worry about germs, and will continue to avoid indoor crowds during cold and flu season. I just read that the anti-viral drugs we all took last year when Patrick had Influenza A do not work against the strain of flu circulating this year. TOm has had his flu shot and Katherine and I will get ours this week. PAtrick can't get the shot and should not be around anyone who has had the inhalable Flu-mist for a couple of days becuase it's made with live virus. I'm just praying that Patrick doesn't get the flu again this year.
Thanks for checking in on the boy.
Sarah
Monday, January 2, 2006 9:39 AM CST
Happy New Year!
Patrick had clinic on December 30 for counts and IV IgG. His counts are generally good, but his ANC was down from 1800 to 1000 so they decided not to increase his 6MP chemo. He'll continue to take 75% and go back in 2 weeks for counts. I think the ANC drop is from a little cold we all picked up in Chicago. We had a great time visiting my family and sharing their germs!
I ran into Patrick's ID doc (Dr. Christensen of Darth Tater fame) and he commented on how good Patrick looked. He mentioned that if things continue to go well and his CMV count remains at "0", we might be able to switch from taking the ganciclovir 3 times every day, to just 5 days a week. That would be great! They sent a count to the lab, so we'll know more in 2 weeks.
We also got an official off treatment date for Patrick. I thought it would be July, 2006, but it is actually August 28, 2006. There is a light at the end of the tunnel!
My goal for this week is to get the kids back on a regular sleeping schedule. We have all been staying up way too late and sleeping in way too long. IT has been fun, though! Rachel, Bill, Maude and Tilly the Puppy stayed with us on the 30th and then we rang in the New Year with the Clearys on the 31st.
Thanks for checking in and a happy, healthy new year to all!
Monday, December 19, 2005 10:12 AM CST
Patrick had a fabulous visit to clinic for counts on Friday. He had some trouble letting Nurse Susan access his port, but she is so awesome, it didn’t faze her. While he waited for his emla cream to numb his port site, Patrick played Santa and delivered little goodies to Dr. Christensen, the kind infectious disease doc who diagnosed his CMV, Dr. Molleston, his GI doc who helped us through liver failure, and of course Dr. Lee and all the nurses, clinic and phlebotomy lab staff. We missed our friends Dustin and Cecilia, but met a new friend, Dean, and his parents. Dean was very nice to Patrick and showed him a really cool Star Wars Game boy game.
On Friday, we heard the disturbing news that one of our clinic nurses is undergoing chemo. Please keep Nurse Donna in your thoughts and prayers.
Patrick’s counts were awesome! His ANC was 2500, so they bumped his 6MP up to 75%. I think he would have tolerated 100%, but they’re very careful when counts have crashed. The oral ganciclovir really does not seem to be suppressing his counts the way the IV medication was. He’s still taking the liquid ganciclovir, because he cannot swallow pills. I have to admit, I haven’t been working as hard as I should on getting him to swallow pills, but there’s just too much other stuff going on now. Patrick is still coughing a lot and complains of frequent tummy aches, but is doing really well otherwise. He is SO excited about Christmas!
Thank you for checking in on Patrick. He loves to check his guestbook, so please leave him a message. Those of you who know Patrick, realize that he has a bit of a mischievous streak—especially when he’s feeling good. Well, I see that he signed his OWN guestbook over the weekend….he is such a rascal!
Love, Sarah
Tuesday, December 6, 2005 4:59 AM CST
A quick, belated update. Patrick had a great clinic visit on Friday 12/02 for IV vincristine, IT methotrexate, and IV IgG. It was a long day, but everything went beautifully! Sharon the NP is the queen of spinal taps--I swear she had us in and out of the procedure room in less than 5 minutes. Patrick tolerated it without squirming. He was sedated, but pointed out to me later in the day that I forgot to apply emla (the topical numbing cream) to his back. He hates having the emla applied because it feels "squishy", so now he says, he's done for good with emla...on his back...he still wants emla on his port site. Wow.
Patrick's counts were perfect! his ANC was about 2400, and everything else was good too, so they decided to edge up his oral methotrexate to 75%. We'll go back for counts on the 16th and if this trend continues, we'll bump up his oral 6MP as well. As we were wrapping up our clinic visit, we had a short but sweet visit with our friends Dustin and Cecelia (and the adorable Macey).
Yesterday was Market Day at school, so the kids were held captive in the gym while I helped with the sale. This is tiring work and although Patrick just played, I think he overtaxed himself and could hardly keep his eyes open at dinner. I gave him his medicine early and put him to bed. I checked his forehead about 20 times before I went to bed and he was cool as a cucumber, so no worries for now.
That's all for now. I hope you all are feeling the joy (and not the stress) of the holiday season.
Thank you for checking in.
Sarah
Tuesday, December 6, 2005 4:59 AM CST
A quick, belated update. Patrick had a great clinic visit on Friday 12/02 for IV vincristine, IT methotrexate, and IV IgG. It was a long day, but everything went beautifully! Sharon the NP is the queen of spinal taps--I swear she had us in and out of the procedure room in less than 5 minutes. Patrick tolerated it without squirming. He was sedated, but pointed out to me later in the day that I forgot to apply emla (the topical numbing cream) to his back. He hates having the emla applied because it feels "squishy", so now he says, he's done for good with emla...on his back...he still wants emla on his port site. Wow.
Patrick's counts were perfect! his ANC was about 2400, and everything else was good too, so they decided to edge up his oral methotrexate to 75%. We'll go back for counts on the 16th and if this trend continues, we'll bump up his oral 6MP as well. As we were wrapping up our clinic visit, we had a short but sweet visit with our friends Dustin and Cecelia (and the adorable Macey).
Yesterday was Market Day at school, so the kids were held captive in the gym while I helped with the sale. This is tiring work and although Patrick just played, I think he overtaxed himself and could hardly keep his eyes upen at dinner. I gave him his medicine early and put him to bed. I checked his forehead about 20 times before I went to bed and he was cool as a cucumber, so no worries for now.
That's all for now. I hope you all are feeling the joy (and not the stress) of the holiday season.
Thank you for checking in.
Sarah
Tuesday, November 29, 2005 7:06 PM CST
Wow-I have been bad about updating. Patrick had clinic last Wednesday and we got great news! His CMV count was down to 0 (“ZERO”)!!! That meant he could stop the IV gancyclovir and start taking it orally—3 times per day for the duration of treatment (July, ’06). Patrick does NOT swallow pills—he chews his chemo and septra and sucks down his prednisone after it dissolves in water (YUCK!). Because gancyclovir is highly cytotoxic and you don’t want to open the capsules unless under a specialized hood, We’re working with Patrick to teach him how to learn to swallow capsules. Right now, he’s taking the liquid form, which he actually likes, but costs a lot more, so it would be great if he could take the capsules.
So we felt great about the CMV news. Patrick’s counts were still just a little low to resume chemo last Wednesday, but I took him back to clinic today for counts and oh my gosh—his ANC was a beautiful 1748! So tonight, he resumes chemo—we’ll start at about 50% of protocol, then he goes for IV IgG and intrathecal Methotrexate on Friday, 12/2 and we’ll keep an eye on his counts and hopefully work our way back up to 100% chemo.
I asked the nurse to have someone check Patrick’s lungs because he’s had a pretty bad cough since last Wednesday (I unilaterally decided to start him on albuteral nebulizer treatments and they seemed to help). Sharon (NP) and Dr. Lee heard something going on, so we went for a chest X-Ray before leaving Riley. I peeked at the image and although I don’t really know what to look for, I didn’t see anything ominous. Sharon was going to call with the results, but I haven’t heard anything, so I assume no news is good news. Dr. Lee did say we should increase his nebulizer treatments to 3 times a day.
I also wanted to mention that Patrick received a free sweatshirt from Helen at Cancer Fighters (via CaféPress). It says “Busy Kicking Cancer’s Butt”. Make sure to check out her website (on the main part of Patrick’s page)—perfect for those last minute holiday gifts…
Thanks for checking in!
Thursday, November 17, 2005 3:30 PM CST
Patrick had a great clinic visit today. His counts are going in the right direction!! Still too low to resume chemo, but we'll probably be there next week (we go back Wednesday for counts). I also spoke to one of the oncologists and our NP and they really eased my worries about having Patrick off of chemo for so long. Basically he has 30 months of pretty steady treatment under his belt and a couple months of mised treatment isnt likely to open the door to the unmentionable. Also, he has not missed any of his spinal taps with MTX. His next tap is scheduled for December 2nd, and surely at the rate he's going, he should be back on track by then.
We had a great visit with Steve and his mom Vera. Chatting with them made the time fly by and it is great to see Steve looking so good!
Still no results from his quantitative CMV, but to Patrick's dismay, the port stays in and regardless of the results, he will continue the IV ganciclovir treatment at least thorugh December 2nd (hopefully only once a day starting next week). Patrick was really hoping to have his port deaccessed so he could start running and playing sports again, but I cheered him up with a visit to the gift shop. I'm just so happy that he has the energy to WANT to do all these normal kid things again. Patrick is calling for a snack so I better sign off. Thanks for checking in!
Tuesday, November 15, 2005 3:58 PM CST
Today Patrick went to clinic for a CBC check and his ANC went down to 275. Normally I’d be pulling my hair out, but our NP explained that it’s probably just because he was sick on Friday and his marrow is recovering. I had really hoped we could resume chemo today, but it looks like I just need to be more patient. Patrick is happy because he gets to continue to eat ice cream before bed and doesn’t have to take all those yucky pills.
Also, there was a little mix up Friday and the quantitative CMV test did not get sent, so they sent one today and we should find out later this week how much, if any, CMV is left in his system. I must say, he’s been feeling great since Sunday afternoon. It is just wonderful to see him full of energy again after a shaky start to the weekend.
Sooo…we go back on Thursday for his IV IgG infusion, CBC and hopefully good news about his quant. CMV.
Thanks for checking in on Patrick and please don’t forget to sign his guestbook.
Friday, November 11, 2005 2:04 PM CST
Patrick started feeling really puny again last night and had to miss his First Reconciliation (rescheduled for Saturday). He woke up this morning with a bad tummy ache and a temp of 103….I’m thinking “please not this again….”. In we went for IV antibiotics and once he got hydrated and had the Tylenol and antibiotics he perked up. His counts are looking good—ANC is up to 1180 in spite of the ANC suppressing ganciclovir! This could be in part due to the 5 day pulse of prednisone he just completed.
Soooo the plan for now is to spend the night at HOME and wait to see if the cultures grow anything (they never do). We’ll go back on Tuesday to re-check counts and if everything looks good, he can resume chemo in baby steps (sounds nuts, but that’s the most exciting news of all!).
They sent out a Quantitative PCR to check how much CMV is left, and we’ll find out the results on Tuesday. We’ll continue on the IV ganciclovir every 12 hours for the next 7-9 days, and then hopefully, taper down to once a day or even oral ganciclovir. He’ll get IV IgG every 2 weeks, and our next appointment for that is Thursday, the 17th.
So all in all we had a shaky start to the day, but things are looking up!
Thanks for checking in on Patrick
Friday, November 11, 2005 2:04 PM CST
Update: Patrick started feeling really puny again last night and had to miss his First Reconciliation (rescheduled for Saturday). He woke up this morning with a bad tummy ache and a temp of 103….I’m thinking “please not this again….”. In we went for IV antibiotics and once he got hydrated and had the Tylenol and antibiotics he perked up. His counts are looking good—ANC is up to 1180 in spite of the ANC suppressing ganciclovir! This could be in part due to the 5 day pulse of prednisone he just completed.
Soooo the plan for now is to spend the night at HOME and wait to see if the cultures grow anything (they never do). We’ll go back on Tuesday to re-check counts and if everything looks good, he can resume chemo in baby steps (sounds nuts, but that’s the most exciting news of all!).
They sent out a Quantitative PCR to check how much CMV is left, and we’ll find out the results on Tuesday. We’ll continue on the IV ganciclovir every 12 hours for the next 7-9 days, and then hopefully, taper down to once a day or even oral ganciclovir. He’ll get IV IgG every 2 weeks, and our next appointment for that is Thursday, the 17th.
So all in all we had a shaky start to the day, but things are looking up!
Thanks for checking in on Patrick!
Friday, November 4, 2005 4:43 PM CST
See this website for info on CMV:
http://kidshealth.org/parent/infections/bacterial_viral/cytomegalovirus.html
Sort of a grouchy day today. Patrick is still not feeling his old spunky self –they say the CMV infection is sort of like Mono and it just zaps your energy.
I took Patrick to clinic for what I thought was just going to be just blood work and IV vincristine. However, it turns out that that final (quantitative) CMV test they did on Monday was positive, so we will go forward with the twice daily IV gancyclovir. He got his first dose in the infusion room and will get the rest at home. The big bummer for Patrick is that he will have his port accessed for at least the next 2 weeks, which makes him feel very grouchy.
Also, I really expected Patrick’s counts to be up from Monday, but actually they went down, so we’re still holding chemo (except for his vincristine, which is not count dependent). Patrick loves the chemo hiatus, because he can eat right up until bedtime—even the forbidden ice cream (dairy blocks absorption of his 6MP), but the longer he’s off chemo the more nervous I get.
So....for now, the plan is:
Continue to hold chemo…Yay Ice Cream!
Bring Patrick back in a week for port needle change and blood work including measuring how much CMV is left and how his liver and kidneys are handling the gancyclovir. The drug can also be hard on white count and platelets, so we’re hoping they hold steady or rise. I’d really like him to start chemo again soon!
Continue IV gancyclovir for the following week, but if things start going our way, he will either taper down to once a day IV, or even better, oral gancyclovir.
It came as a surprise to me, but his doc said that because his immune system is so “shattered” from 30 months of chemo, he will need to stay on some form of gancyclovir for the duration of treatment (another 8 months). He will also continue to have the IV IgG every 2-4 weeks.
Okay, so what are we praying for????? Patrick’s good old counts so we can resume his chemo. Yay poison!
Now for the good news of the day! We saw Jenny and Mickey in clinic and had a chance to visit—such a ballerina! Jenny, I hope Mickey’s ears are better!
Nana and Grandpa Charles are here this weekend for PATRICK’S 8th birthday (Monday!).
Have a wonderful weekend and please don’t forget to leave Patrick a birthday message in the guestbook!
Tuesday, November 1, 2005 7:28 AM CST
I hope everyone had a Happy Halloween! Patrick spent the day at Riley getting blood work and infusion of IV IgG. The nurses all dressed up as Colt’s Football players and coincidentally, Patrick was wearing his Colts jersey. We couldn’t have planned it better.
Great news--Patrick’s counts have vastly improved! His ANC went from 400 to 800, and I'm sure he will soon be right up there past his usual 1000. We are still holding all chemo, but will re-check on Friday and possibly restart then.
So far Patrick’s CMV tests have come back positive, but it could be a false positive as a result of getting IV IgG (antibodies from a pool of 10,000-50,000 blood donors) on Friday 10/21. They sent a final test yesterday which should give us a more definitive answer. They didn’t want to start treating him with twice daily IV antiviral medication because the gancyclovir (sp?) can suppress counts. We’re hoping that the double dose of IV IgG he got yesterday will give his immune system what it takes to clear the CMV up on its own.
Patrick and I closed the clinic down last night—I felt kind of bad for the nurses who had to stay, but actually, I think Nurse Lindsey enjoyed the extra time with Patrick even though her much sought after kiss from him never materialized.
We got home from Riley at about 7:00p.m. and I really didn’t think he was going to be able to Trick or Treat-he crashed in the car and it looked like it was going to be another one of his marathon naps. It should not come as a big surprise that once we got home and he realized there was a lot of candy to be gathered out there, he put on his Darth Vader mask and went with Tom up and down our block. I should add that Katherine had taken his pumpkin with her and it was practically full by the time he went trick or treating.
Patrick got a surprise in the mail from cousin Andrea yesterday—A poster of her volleyball team (Viterbo College, In LaCrosse, WI), all signed with get well wishes. He sure likes looking at the pretty girls! Thank you Andrea!
We got some good news about Baby Donovan today—it looks like he is good to go for his CBT! This is wonderful….see for yourself: www.caringbridge.org/in/babydonovan
WAY TO GO BABY D! We’re all rooting for you!
Patrick just woke up and I’m hoping he will be able to attend a half day of school today and maybe all day tomorrow.
Thanks for checking in.
Sarah
Thursday, October 27, 2005 5:36 PM CDT
Yessss! We are preparing to be discharged from Riley. Patrick has about another hour to go on his red blood transfusion, then paperwork then HOME SWEET HOME! He’s still running lower fevers, but they seem to be progressively lower (~100.4). I’ll give him IV antibiotics every 8 hours, and will put him to bed on IV fluids. We return to the clinic on Monday to check his counts and we’ll take it from there. His ANC is still 400, so we’ll be doing the neutropenic thing (mask, no crowds, etc.) until he’s back up where he needs to be. I’m a little nervous about administering the IV meds at home because I haven’t done that in 2 years, but I’ll get the hang of it again and if I get stuck, the nurse is just a phone call away.
I can’t believe I forgot to mention one of the highlights of Pt’s inpatient stay. When Dr. Christenson the ID doc, saw that Patrick is a Star Wars fan, he promised to return to the room with a special gift. Later he presented Patrick with …get this… A Mr. Potato Head ala Darth Vader. The Name on the box is…..Darth Tater. I’ve had so many laughs over that. What an awesome gesture from Dr. Christenson.
Our PCA just took his temp and it’s back to 101.6, but I have our discharge papers and we’re off. I am praying that the fevers stay down. We don’t need to call unless it hits 103.
Hey! Next update will be from home!
Thursday, October 27, 2005 11:09 AM CDT
I have wonderful news to report. Less than 1 hour after Patrick's Bone Marrow Biopsy, Dr. Pradhan came in to tell us that there was no leukemia present in his bone marrow. You can imagine the huge sense of relief we're feeling right now. Dr. P even suggested we might be discharged today-I sure hope so! Patrick's fevers have been lower (~101.8), and they can give him a 24 hour dose of antibiotic so even if he spikes at home, we can avoid going to the ER because we'll know its not bacterial. I think he just wants to check with Infectious Disease to make sure we're clear to go. Have not heard anything yet regarding the tests for Cat Scratch, Histoplasmosis, CMV, Epstein Barr, and whatever other tests they ran that I forgot about. I think we can just wait those out at home.
We are just so thankful right now.
Big Hugs to everyone!
Thursday, October 27, 2005 11:09 AM CDT
I have wonderful news to report. Less than 1 hour after Patrick's Bone Marrow Biopsy, Dr. Pradhan came in to tell us that there was no leukemia present in his bone marrow. You can imagine the huge sense of relief we're feeling right now. Dr. P even suggested we might be discharged today-I sure hope so! Patrick's fevers have been lower (~101.8), and they can give him a 24 hour dose of antibiotic so even if he spikes at home, we can avoid going to the ER becuase we'll know its not bacterial. I think he just wants to check with Infectious Disease to make sure we're clear to go. Have not heard anything yet reagarding the tests for Cat Scratch, Histoplasmosis, CMV, Epstein Barr, and whatever other tests they ran that I forgot about. I think we can just wait those out at home.
We are just so thankful right now.
Big Hugs to everyone!
Thursday, October 27, 2005 11:09 AM CDT
I have wonderful news to report. Less than 1 hour after Patrick's Bone Marrow Biopsy, Dr. Pradhan came in to tell us that there was no leukemia present in his bone marrow. You can imagine the huge sense of relief we're feeling right now. Dr. P even suggested we might be discharged today-I sure hope so! Patrick's fevers have been lower (~101.8), and they can give him a 24 hour dose of antibiotic so even if he spikes at home, we can avoid going to the ER becuase we'll know its not bacterial. I think he just wants to check with Infectious Disease to make sure we're clear to go. Have not heard anything yet reagarding the tests for Cat Scratch, Histoplasmosis, CMV, Epstein Barr, and whatever other tests they ran that I forgot about. I think we can just wait those out at home.
We are just so thankful right now.
Big Hugs to everyone!
Thursday, October 27, 2005 10:10 AM CDT
Update
Hi Everyone: I just wanted to let you know that we just came out of the procedure room and Patrick did an awesome job with the BMA. The worst part was getting the emla on as usual. They're not busy in the lab today, so we might get the results in 2 hours. The marrow flowed easily and was not sticky which I'm taking a s a really good sign. Thanks again for your words of encouragement and prayers.
S & T
Wednesday, October 26, 2005 10:25 PM CDT
Patrick’s last big fever was at 5:00 am (103), since then, however, it’s only gone up to 101. Dr. Pradhan was ready to discharge us contingent on blood counts. Since Patrick’s counts have been so good-even up until Monday, I was packed and ready to go home. Then at about 4:00, Dr. came in and said based on his dropped counts and the 6 weeks of unexplained fever, there’s a chance that he has relapsed. I want to emphasis that there was NO leukemia in his peripheral blood which is wonderful.
We decided to schedule a bone marrow biopsy for tomorrow at 9am. At first I was just devastated at hearing the word relapse and just sure that this was our worst fear come true. However, I have since heard from members of ALL-Kids ListServe that they have been through scares like this and it could just be that his marrow is recovering from the insult of all these viruses. I will go to bed full of hope that tomorrow at this time we will be breathing big sighs of relief. I will also pray extra hard for the many families we know personally and from ALL-Kids who have, indeed, relapsed.
On a brighter note, today was an awesome day for visitors. It started off with Becky & Randy from my office. Randy, thank you for loaning me the computer and spending so much time setting it up just the way I like it! Becky is the best. She loves Patrick almost as much as I do and is so good to him. Yesterday she brought him a huge Darth Vader balloon, like 3 feet tall, and today she brought him Star Wars videos 4, 5, and 6. What a great start to our day!
Then we had a visit from Dustin Kenna from clinic and his mom, Cecilia and the Adorable Macey (they are pictured on the photo page). They brought Patrick a very fun goodie bag and we’ve been “growing” sponge creatures all day. Thank you Dustin and Cecilia!
Then, visits from Sweet Aunt Mary (bearing gift of Shapiro’s Corned Beef for me), Grandpa and Grandma (bearing gifts of tomato for me and goodies for Patrick and Katherine). Could things get any better????? Yes! We were treated to a visit from our wonderful friend Kathleen and her kids Daniel and Allison. They were bearing the gift of Patrick’s sister Katherine. So I had a chance to see my girl who I’ve been missing so much. Kathleen nad Joe have practically adopted Katherine since Patrick has been inpatient and I just don't know what we would do without them. The icing on the cake is that Katherine is having a great time and is distracted from the tumult of having Patrick inpatient.
Our final visitor of the day was Father Jeff who came to support us, pray with us and most of all to chat with Patrick.
So I am still running a bit on adrenaline at the moment, but I’m savoring the encouraging messages I have received from friends on the All-Kids list.
From what I understand, we should have preliminary results by mid-afternoon tomorrow and something definite by Friday. It could be sooner depending on how busy they are are in the lab.
Thanks you for checking in on us and especially for leaving your messages in Patrick’s guest book. Sarah and Tom
Wednesday, October 26, 2005 10:25 PM CDT
Patrick’s last big fever was at 5:00 am (103), since then, however, it’s only gone up to 101. Dr. Pradhan was ready to discharge us contingent on blood counts. Since Patrick’s counts have been so good-even up until Monday, I was packed and ready to go home. Then at about 4:00, Dr. came in and said based on his dropped counts and the 6 weeks of unexplained fever, there’s a chance that he has relapsed. I want to emphasis that there was NO leukemia in his peripheral blood which is wonderful.
We decided to schedule a bone marrow biopsy for tomorrow at 9am. At first I was just devastated at hearing the word relapse and just sure that this was our worst fear come true. However, I have since heard from members of ALL-Kids ListServe that they have been through scares like this and it could just be that his marrow is recovering from the insult of all these viruses. I will go to bed full of hope that tomorrow at this time we will be breathing big sighs of relief. I will also pray extra hard for the many families we know personally and from ALL-Kids who have, indeed, relapsed.
On a brighter note, today was an awesome day for visitors. It started off with Becky & Randy from my office. Randy, thank you for loaning me the computer and spending so much time setting it up just the way I like it! Becky is the best. She loves Patrick almost as much as I do and is so good to him. Yesterday she brought him a huge Darth Vader balloon, like 3 feet tall, and today she brought him Star Wars videos 4, 5, and 6. What a great start to our day!
Then we had a visit from Dustin Kenna from clinic and his mom, Cecilia and the Adorable Macey (they are pictured on the photo page). They brought Patrick a very fun goodie bag and we’ve been “growing” sponge creatures all day. Thank you Dustin and Cecilia!
Then, visits from Sweet Aunt Mary (bearing gift of Shapiro’s Corned Beef for me), Grandpa and Grandma (bearing gifts of tomato for me and goodies for Patrick and Katherine). Could things get any better????? Yes! We were treated to a visit from our wonderful friend Kathleen and her kids Daniel and Allison. They were bearing the gift of Patrick’s sister Katherine. So I had a chance to see my girl who I’ve been missing so much. Kathleen nad Joe have practically adopted Katherine since Patrick has been inpatient and I just don't know what we would do without them. The icing on the cake is that Katherine is having a great time and is distracted from the tumult of having Patrick inpatient.
Our final visitor of the day was Father Jeff who came to support us, pray with us and most of all to chat with Patrick.
So I am still running a bit on adrenaline at the moment, but I’m savoring the encouraging messages I have received from friends on the All-Kids list.
From what I understand, we should have preliminary results by mid-afternoon tomorrow and something definite by Friday. It could be sooner depending on how busy they are are in the lab.
Thanks you for checking in on us and especially for leaving your messages in Patrick’s guest book. Sarah and Tom
Tuesday, October 25, 2005 12:45 AM CDT
Patrick was admitted to Riley Hospital yesterday after spending the day having xray, CT and ultrasound of his tummy to try to figure out why the belly pain and fever. THey thought they saw something on the CT scan, and initially on the ultrasound, but by the end of the study, his insides looks back to normal. A repeat u/s this morning was perfectly normal. The other thing was a fever of 102-103, that he can't seem to shake. He'd been on a liquid diet until he ate some pancake an hour ago. He felt pretty good, but then....let's just say, he camped out in the bathroom for a bit...at least we know things are moving along. I had fully expected to be discharged today, but the nurse just told me it looked doubtful becuase of the fever. They want to know why, so we're waiting for an Infectious Disease consult. The Know-It-All in me wants to say, the fever is due to a virus and his body just needs time to recover. He is really unhappy about being here, and I'm afraid I've lost some credibility with him since I practically promised he'd sleep in his own bed tonight after watching Star Wars.
SOmeone is here, so I'll update more later.
Thanks for checking in.
JENNY-THANK YOU FOR THE COMPANY! I really enjoyed our visit.
Saturday, October 22, 2005 1:31 PM CDT
Hello
Patrick recieved his first infusion of IV IgG yesterday to boost his ability to fight viruses. He did well and had a fun visit from Sweet Aunt Mary duting the 4 hours infusion. He spiked a high fever last night but that might have been a reaction to the IgG. He's still feeling crummy and has not eaten a thing all day. He is drinking fluids, though. His temp has been holding steady all day at about 100. I really thought this IV IgG would make him bounce back right away, but I guess we need to be more patient. I just hope he's ok to go to school on Monday.
Patrick will get IV IgG every 3-4 weeks for the duration of his treatment. I've heard from others that it works wonders.
Patrick is now having a little visit from his friend Daniel and he suddenly seems to be feeling better. Amazing how a visit from a good friend can cheer you up!
Thanks for checking in--don't forget to sign the guestbook--Patrick enjoys hearing from you.
Thursday, October 20, 2005 10:30 AM CDT
Update: Dr. Lee called last night and sure enough…we have answers! As suspected, the reason for Patrick’s frequent fevers is very low immunoglobin levels. He can’t fight off any of those nasty viruses floating around. His IgG is only 149 and normal is 600-1400. They usually treat with IV IgG if the level gets down to 300. We have a date in the infusion room tomorrow. Patrick hasn’t been in the infusion room since the bad old days of intense chemo in 2003. We are, however, looking forward to seeing our old friends who work there.
To say the least, we’re relieved to finally know what is going on—Patrick spiked another fever last night (102) right before we got the call about his IgG results. (We avoided the ER because Patrick had IV antibiotics the day before.) Now at least we have a plan for remedy and can expect to get back to school (and work) real soon!
Tuesday, October 18, 2005 2:12 PM CDT
Seems like every time I say the fever is gone--it comes back. I'm going to have to just zip my lips! Patrick started simmering last night after supper and woke up crying at 3:30 with a temp of 101.4-just short of a trip to the ER, thankfully. We're just concerned because he's been feverish off an on since mid-September. Of course we're glad that nothing serious comes from the fevers...
Anyway, he was thoroughly checked out by a Dr. we never met before. Lungs clear, ears healthy, etc. Patrick counts all looked good (ANC 1200), but the Dr. suggested checking his immunoglobulin levels. A bit later our regular Doc, Dr. Lee stopped in to visit. She sure is wonderful. You can ask her the same questions over and over and she never makes you feel dumb or like you’re taking up too much time. Anyway, she explained that the absolute neutrophil count (ANC) generally indicates your ability to fight bacteria (neutrophils attack bacteria) and your IG levels indicate your ability to fight viruses. She said that sometimes leukemia kids (especially boys due to the longer treatment) have chronically lowered IG levels (prednisone suppresses lymphocytes which help ward off viral infections). We’ll get the results back in a day or two and if that is the problem, there’s an injection they can use to boost it up. I sure would like to say goodbye to all these viruses now rather than as we get more and more into cold and flu season.
We’re also keeping an eye on Patrick’s albumin and protein levels which are on the low side. Will probably meet with a dietician next appointment. Well, Patrick’s waking up and I promised to make Halloween decorations with him, so that’s all for now.
Thanks for checking in.
Tuesday, October 18, 2005 2:12 PM CDT
Seems like every time I say the fever is gone--it comes back. I'm going to have to just zip my lips! Patrick started simmering last night after supper and woke up crying at 3:30 with a temp of 101.4-just short of a trip to the ER, thankfully. We're just concerned because he's been feverish off an on since mid-September. Of course we're glad that nothing serious comes from the fevers...
Anyway, he was thoroughly checked out by a Dr. we never met before. Lungs clear, ears healthy, etc. Patrick counts all looked good (ANC 1200), but the Dr. suggested checking his immunoglobulin levels. A bit later our regular Doc, Dr. Lee stopped in to visit. She sure is wonderful. You can ask her the same questions over and over and she never makes you feel dumb or like you’re taking up too much time. Anyway, she explained that the absolute neutrophil count (ANC) generally indicates your ability to fight bacteria (neutrophils attack bacteria) and your IG levels indicate your ability to fight viruses. She said that sometimes leukemia kids (especially boys due to the longer treatment) have chronically lowered IG levels (prednisone suppresses lymphocytes which help ward off viral infections). We’ll get the results back in a day or two and if that is the problem, there’s an injection they can use to boost it up. I sure would like to say goodbye to all these viruses now rather than as we get more and more into cold and flu season.
We’re also keeping an eye on Patrick’s albumin and protein levels which are on the low side. Will probably meet with a dietician next appointment. Well, Patrick’s waking up and I promised to make Halloween decorations with him, so that’s all for now.
Thanks for checking in.
Monday, October 17, 2005 11:59 AM CDT
Just another quick update following a fun and busy weekend! We had a little get together at Jillian's to wish Baby Donovan's family well as they embark on the next phase of their journey in North Carolina. Please continue to pray that all goes well with his cord blood transplant and they find themselves safely back home in Indiana in 6 months. There's a photo of the group on the next page (click "View photos"). Photo credits go to Melissa'sdad. Patrick wasn't able to go because he had a fever, but next time, he'll be there!
Patrick's fever is gone for now, but he's been complaining a lot of tummy and muscle pains. First his legs hurt, then his arms, then his neck. I think it's the vincristine he had a week and a half ago. I'm leaning toward bringing him in to clinic on Friday, just to have his counts checked.
Now can I say a thing or two about Katherine??? Her soccer team played at the Zionsville Tournament this weekend and they did great! Her team won both games on Saturday and ended up in the championships on Sunday. They lost both games on Sunday, but played so well. They came in 2nd place in their age group and were so pleased with themselves. I still don't "get" the whole soccer thing, but I know for certain that it has been great for Katherine; she loves being part of a team and has really worked hard to improve her skills. Trophy or no, that's good enough for me! (They did get trophies, though…cool!)
Thanks for checking in!
Sunday, October 9, 2005 2:03 PM CDT
Just a quick update to say that Patrick's doing great! Hasn't had a fever since Thursday and I think they're gone for good. He had a clinic appt on Friday and Dr. Hill think's Patrick was just picking up whatever little bugs were floating around school. Patrick's teacher is great about having the kids wash their hands, but there's only so much you can do with these little germ factories!
Patrick's at the Pacer's Fan Jam hoping to get autographs and maybe even a good photo to post on his site! As soon as he gets back we're heading to Bishop Chatard High School's Dance-a-thon to benefit Riley Hospital for Children.
A big thank-you to all those kids for supporting Riley!
Tuesday, October 4, 2005 4:42 PM CDT
At home again with fever today. It hasn't gotten high enough for a trip to the ER-thank goodness-just hovering between 100 and 101. He slept for a couple of hours and woke up feeling pretty good. Patrick's wonderful 2nd grade teacher took an hour out of her day to come here and go over what he missed at school. She is such a wonderful, caring teacher!
Thanks for checking in!
Thursday, September 29, 2005 4:32 PM CDT
We spent the day at Riley trying to figure out why the maistoid area behind Patrick’s ear was red and slightly swollen. It was a long day, but Patrick handled it well (it helped that had no fever all day and got a good night’s sleep last night). He read to me and played Game Boy to kill time. He had a CT scan to rule out mastoiditis and it came out all clear. Dr. thinks it might just be a mild skin infection, so we got an Rx for antibiotics and Patrick even made it in for the last hour of school. He was so eager to get to school and he said his class let out a cheer when he walked in. Isn’t that sweet? His teacher is great – she’s very supportive an in tune with Patrick. She has even offered to help Patrick him after school on an as-needed basis.
That’s all for now. Thanks for checking in!
Wednesday, September 28, 2005 0:17 AM CDT
Well, that annoying fever reappeared this evening. Patrick was fine all day until he started complaining of a headache at about 5:00. He had a slight fever which I monitored hoping that it wouldn’t hit 101.5 since that usually means a trip to Riley ER. Of course, it eventually got up there and I called the Hem Onc provider on-call thinking maybe she’d let us off the hook knowing that Patrick’s counts have been good and that he’s not been lethargic or complaining of serious pain.
Long story short, by the time we got to the ER, his fever was down a whole degree—but better safe than sorry! He got his IV antibiotics and they sent us packing a little before midnight. His counts are still great (ANC 975)!
Patrick handled everything really well tonight. He HATES those patches they stick on him in the ER to monitor his vitals, but he dealt with it. Of course, it will be many weeks, many baths and many dousings with adhesive remover before he finally lets me pry them off.
I suspect that Patrick and I will take the day off tomorrow to catch up on sleep and bid this unwelcome fever goodbye once and for all!
Thank you for checking in and please do sign Patrick’s guestbook—he love getting your messages.
Also THANKS to our family, friends and co-workers who are praying hard for baby Donovan who has relapsed infant ALL and is trying really really hard to get into remission so he can have a cord blood transplant. I had the pleasure of meeting him, his mom and his grammie today and he is about the cutest little guy I’ve ever seen.
Good NIGHT!
Saturday, September 24, 2005 8:32 PM CDT
Just a quick update to say we had a fever-free day! Patrick watched his team play soccer today and even played a little bit. I still have not seen him play this season because they tend to conflict with Katherine's games. She play really well today, by the way--especially considering she hardly slept last night on the girl scout sleepover (me neither).
Since he didn’t get his sleepover last night, we’re having Daniel over tonight. Went to Daniel’s favorite restaurant (Japanese) hoping Patrick might try something not resembling deep fried chicken nuggets. That did not go well, but the rest of us enjoyed our meals.
Thanks for checking in on Patrick and don’t forget to sign his guestbook!
Love,
The Maxwells
Friday, September 23, 2005 3:35 PM CDT
Hello!
Patrick's still running a low temp- between 100 and 100.4, but he's not acting sick at all. In general, kids on chemo get fevers all the time, but for some reason Patrick rarely does (we're a family of ice cubes). I jut spoke with th phone nurse and she said to call back if he's still "simmering" next week (or if it spikes above 101.5 over the weekend). The biggest concern is his reaction when I tell him he won't be able to spend the night at Daniel's as planned! He's still pretty good at throwing fits--a skill he honed back in the days of high dose prednisone.
Tom will be on fever watch tonight as I'm chaperoning the Girl Scouts at their sleepover at Butler University's Hinkle Field House. I believe we're sleeping on the basketball court floor which should be interesting....
Have a wonderful weekend and thanks for checking in on Patrick!
Sarah
Wednesday, September 21, 2005 8:37 AM CDT
Happy last day of summer!
Patrick is staying home from school today because he’s running a slight fever—it’s been hovering around 100. Unfortunately, he’s missing Day 2 of the standardized testing (Terra Nova), but these things happen. He actually seems okay and has been eating normally and has no specific complaints other than mild headache and stomach ache, so at this point I’m just keeping an eye on it. Hopefully, the fever will stay down and we will avoid the trip to Riley and he can resume school tomorrow!
Wednesday, September 21, 2005 8:37 AM CDT
Happy last day of summer!
Patrick is staying home from school today because he’s running a slight fever—it’s been hovering around 100. Unfortunately, he’s missing Day 2 of the standardized testing (Terra Nova), but these things happen. He actually seems okay and has been eating normally and has no specific complaints other than mild headache and stomach ache, so at this point I’m just keeping an eye on it. Hopefully, the fever will stay down and we will avoid the trip to Riley and he can resume school tomorrow!
I have some great pictures I need to put up on this site, but am having trouble sizing them down. Be patient! Thanks for checking in!
The Maxwells
Saturday, September 10, 2005 10:36 PM CDT
Hello!
We’re not so great about updating these days….but as usual, you can take this as a sign that things are going really well for Patrick. We have also been pretty much glued to the Hurricane Katrina coverage. Our thoughts are with all of the families that have lost so much because of this natural disaster and have suffered further due to the delay in relief. I know… there are other web sites you can go to for all that…..
Patrick had a spinal tap yesterday. Things went really smoothly in spite of the fact that I almost forgot that he had a procedure scheduled and had breakfast in front of him when I re-checked the calendar and saw “LP” (lumbar puncture) marked down. The light bulb went off and the message “nothing by mouth for ~ 6 hours prior to conscious sedation” started flashing, and I grabbed that cinnamon toast away from him in a flash. He didn’t even complain all morning—even as I surreptitiously took bites of my bagel.
The bright point in our day was seeing friends Dustin (and Cecilia) and Steve (and Vera) in clinic. These kids really perk up when they can show off their Game Boy skills to one of their fellow inmates.
Patrick, Katherine and I went to the Riley Hospital Cancer Survivors Day at the zoo today. The kids got to do crafts and play games, while the parents participated in the world’s most intense conference. The focus was late-term effects of treatment. The gist of it was that we have come so far in curing childhood cancer, but there will likely be some costs (i.e., long term side effects) that go along with the gift of having our children cured. I know now more than ever that Patrick’s illness has reshaped our lives not just for the few years of treatment, but really, forever. I worry about the possible late effects of treatment but I’ll take that over the alternative ANY DAY.
Well, it is late and I have a couple of girls to send to bed (Patrick is on a sleepover). Take care and thanks for checking in on Patrick ---even though I have been lazy about updating….
Sarah
Sunday, August 14, 2005 7:19 PM CDT
Hello everyone! We just got back from seeing all of my family in Cape Hatteras—just like the good old days! Last time we vacationed there was about 5 months into Patrick’s treatment (8/2003) and it was not great. He was pale and puking and feeling lousy most of the trip. What a difference a couple of years and being on maintenance therapy makes! He had a great time as did Katherine and I—we just missed having Tom there. Tom couldn’t come because we just returned from our trip to Boston and one can only take so much vacation….
It was very uplifting to be with my siblings and the whole family—sometimes I forget how much I miss seeing them. It was especially wonderful to see the kids enjoying their time with the family. Patrick had special times with Uncle Tim playing in the low tide surf and with Uncle Tim, Uncle Randy, Nick and Sam Go-Karting. Not surprisingly, Patrick’s favorite times involved playing Play Station and watiching TV. Pat has his monthly visit to clinic tomorrow for IV vincristine and I expect it to go smoothly. Maintenance has been very very good to us.
Take care and thanks for checking in on Pat.
Sarah et al…
Friday, July 22, 2005 2:56 PM CDT
Just a quick entry to share that Patrick's counts were fabulous today. His ANC shot up to 2700 thanks to the prednisone pulse he just completed. He's spending the day with Aunt Cindy and Cousin Joe, and tomorrow we head to Boston/Cape Cod for a week.
Happy Summer Everyone!
Friday, July 15, 2005 7:45 PM CDT
Patrick had a clinic visit for IV chemo today. Everything went really well and Patrick cooperated throughout the entire exam. His ANC is borderline (845), so we’ll continue daily oral chemo as usual, but go back in a week or so to have his counts re-checked.
We had a nice surprise last night—Patrick’s friend Steve from clinic and his mom were staying in Indy overnight due to back to back clinic visits, so they came over for dinner and a visit. They have a 3 hour drive each way every time they come to clinic. Another reminder of how lucky we are to live 8 miles from Riley.
The kids are looking forward to attending Survivor Camp next week (as in how to survive in the wilderness), the following week we go to Boston and Cape Cod, then in August, the Outer Banks. Then, alas…school starts :(
Enjoy what is left of summer and thanks for checking in on Patrick.
The Maxwells
Friday, July 15, 2005 7:45 PM CDT
Patrick had a clinic visit for IV chemo today. Everything went really well and Patrick cooperated throughout the entire exam. His ANC is borderline (845), so we’ll continue daily oral chemo as usual, but go back in a week or so to have his counts re-checked.
We had a nice surprise last night—Patrick’s friend Steve from clinic and his mom were staying in Indy overnight due to back to back clinic visits, so they came over for dinner and a visit. They have a 3 hour drive each way every time they come to clinic. Another reminder of how lucky we are to live 8 miles from Riley.
The kids are looking forward to attending Survivor Camp next week (as in how to survive in the wilderness), the following week we go to Boston and Cape Cod, then in August, the Outer Banks. Then, alas…school starts :(
Enjoy what is left of summer and thanks for checking in on Patrick.
The Maxwells
Friday, June 17, 2005 6:05 PM CDT
Hello everyone! Things went really well at clinic today. Patrick’s blood counts were all within normal range for a kid on chemo and his spinal tap went off without a hitch. While we were waiting to go to the procedure room, we had a visit from Sweet Aunt Mary and her friend from the office. Patrick was only semi-conscious as the Benedryl part of his sleepy cocktail was starting to kick-in as she arrived, but I had a nice chat with her. After the procedure, we went down to the lobby where a book sale was going on. Patrick picked out a thick Bible activity book for himself (no surprises there) and a couple of joke books for Katherine.
We have a busy weekend planned. Tomorrow Patrick’s T-Ball team plays against the parents at 8:30 A.M. (yippee?) and on a brighter note, we’re looking forward to going to the St. Bernadette’s Festival tomorrow evening. Uncle John, Aunt Cindy, Jack and Joe will be there and we’re planning on getting together with Patrick’s friend from clinic, Dustin.
And then of course, Happy Father’s Day to all the Dads out there!
Love, The Maxwells
P.S. Katherine got a spot on FC Pride, a traveling soccer team! This will mean lots of mileage on the new minivan for the 2/wk practices and who knows how many games on the weekends, but fortunately, we’ll be carpooling with at least 2 other families AND this won’t start until the fall. I think this will be a wonderful experience for Katherine and she’s pretty excited about it too!
Friday, June 17, 2005 5:58 PM CDT
Hello everyone! Things went really well at clinic today. Patrick’s blood counts were all within normal range for a kid on chemo and his spinal tap went off without a hitch. While we were waiting to go to the procedure room, we had a visit from Sweet Aunt Mary and her friend from the office. Patrick was only semi-conscious as the Benedryl part of his sleepy cocktail was starting to kick-in as she arrived, but I had a nice chat with her. After the procedure, we went down to the lobby where a book sale was going on. Patrick picked out a thick Bible activity book for himself (no surprises there) and a couple of joke books for Katherine.
We have a busy weekend planned. Tomorrow Patrick’s T-Ball team plays against the parents at 8:30 A.M. (yippee?) and on a brighter note, we’re looking forward to going to the St. Bernadette’s Festival tomorrow evening. Uncle John, Aunt Cindy, Jack and Joe will be there and we’re planning on getting together with Patrick’s friend from clinic, Dustin.
And then of course, Happy Father’s Day to all the Dad’s out there!
Love, The Maxwells
P.S. Katherine got a spot on FC Pride, a traveling soccer team! This will mean lots of mileage on the new minivan for the 2/wk practices and who knows how many games on the weekends, but fortunately, we’ll be carpooling with at least 2 other families AND this won’t start until the fall. I think this will be a wonderful experience for Katherine and she’s pretty excited about it too!
Friday, June 3, 2005 8:45 PM CDT
ZZZZZZZZZZZZZZZzzzzzzzzzzz
If you hear snoring, it’s just Patrick in the next room sleeping off a very busy day. We started out going to Riley first thing in the morning—just for blood counts which, by the way were MOST EXCELLENT in spite of being on 100 hemo for the past 2 weeks! This is great news. His liver panel from 2 weeks ago came back in the normal range too.
The waiting room was packed and things went pretty slowly, but at least we got to catch up with Mindy, Patrick’s favorite patient tech (soon to be nurse), and Stephan M., who was diagnosed with leukemia on Valentine’s Day and is always in our thoughts. After we left the clinic, we went down to the main hospital lobby where the Riley Hospital Radiothon was going full-force. The radio station (95.5 WFMS) taped an interview with us a few months ago and we kind of forgot about it until people started telling us that they heard us on the radio. Anyway, Patrick and Katherine and I went down to say hi to the announcers after our clinic visit and they did a very brief LIVE interview with Patrick. He did a nice job of fundraising for Riley Hospital. He said that Riley was a good place to go if you’re sick because “they know what they’re doing”. What an understatement, but in his eyes, that’s really all that matters (especially when it comes to accessing his port!).
After Patrick’s 15 seconds of fame, I forced the kids to come to my office for about 4 hours (an eternity for them) so I could take care of a few things. When we got home, just as the kids were about to engage in hand-to-hand combat over which TV station to watch they were both sent to their rooms. Patrick threatened to climb out of his window and run away to Chicago, but instead fell asleep and is still sleeping so deeply that I’m just going to wake him for his 6 MP and will let him take his 7 pills of methotrexate tomorrow.
Almost forgot to mention that yesterday was the kids’ last day of school. They both did very well on their report cards and we’re looking forward to the next 10 weeks of relative down-time. I am seriously considering unplugging the TV for the summer, but we shall see….
Take care and thanks for checking in.
With Love,
The Maxwells
Monday, May 23, 2005 7:18 PM CDT
Patrick's counts were perfect on Friday and he's back on 100% chemo. We're going back in 2 weeks to re-check counts just to make sure the extra chemo doesn't cause them to crash.
We're finally all over our colds and ready to start enjoying the beautiful weather. Patrick had a busy weekend which included a visit from Grandpa Craig and Barbara, a T-ball game, and lots of shooting hoops and Playstation 2 with his good buddy Daniel.
Take care and thanks for checking on the boy....
The Maxwells
Wednesday, May 18, 2005 10:58 AM CDT
Long time no update!
Patrick’s just about over a nasty cold that he’s had for almost 3 weeks. He missed school last Wednesday due to a low fever that I wanted to keep an eye on. Late Sunday night he spiked a fever of 102.8 and for some reason (Emergency Room Aversion???) I thought that we only needed to call the doctor if he was neutropenic with a fever of over 101. I also felt certain it was viral and recognized what I thought would be the usual pattern of Patrick spiking a fever that resolves on its own (after hanging out in the ER for hours). Anyway, I called first thing in the AM and the phone nurse gently informed me that my logic was flawed. Regardless of neutropenia any time these kids have a fever of over 101, the need to come in ASAP for IV antibiotics (“it has to do with the fact that there’s a device implanted in his heart” i.e., his port). Now, 2 years into this, I finally get it!!!
We went into clinic for his IV antibiotics and his fever had already completely abated. His counts looked really good, although his ANC was a whopping 6,800—we like it to be around 1,000, but I guess too high is better than too low. Patrick is continuing to take 75% chemo and we go to clinic on Friday for vincristine and to re-check counts. I’m hoping he’ll go back up to 100% chemo after Friday. I’ll update if there’s any news.
Take Care.
The Maxwells
Saturday, April 23, 2005 4:19 PM CDT
Patrick did really well at clinic yesterday. This was probably the smoothest spinal tap he every received. The NP got the needle in on her first attempt and Patrick didn’t scream or fuss or even kick! Even better, he doesn’t have to have another spinal tap until June! His counts were good (WBC 2.0, HgB 10.5, Platelets 184, ANC 1300), but since his’ ANC was recently on the low side, we’re going to keep him at 50% chemo for now and bring him back for blood counts on May 6th (Happy Birthday Daddy and Cousin Andrea!). We saw Dustin and his mom at clinic, which was a rare treat. It’s great to see kids we met while inpatient looking like a million bucks!
The weather was the big news around here yesterday; we had a tremendous hail storm. I was picking Katherine up from her friend’s house and since it was raining and Patrick was still a bit woozy, I left him in the car while I went it to get Katherine. Suddenly we’re being bombarded by hail the size of moth balls –some the size of quarters and poor Patrick is hysterical alone in the car. K and I ran to the car as fast as we could, and I wasn’t sure if it was going to be safe to drive in the mess so at first I try pulling under trees, but that wasn’t sheltering us—we were more at risk from the falling branches. By the time we get to our street, there’s a layer of hail about 2 inches deep covering everything. I almost didn’t make it up the driveway. Anyway, once in the garage, the mood changed from totally freaked out to interested amazement at this display of nature. When it finally stopped coming down, the kids played with it for a while. That’s about it for the local weather news. Thanks for checking in!
Monday, April 11, 2005 3:41 PM CDT
Patrick went to clinic today for blood draw. After his recent ER experience, he was really nervous about having his port accessed, but Tom and I explained that the nurses at Riley know are experts at this kind of thing. He was pretty uncooperative at first, but our nurse, Kelly, was so quick and efficient that we were out of there in no time. All counts look good, but his ANC is a bit low (in the 600’s), so we’re going to cut his oral chemo in half until his next visit to Riley in 11 days.
Today was also the first day back at school after Spring Break. It’s hard to do homework when the weather is so nice!
Bye for now.
Saturday, April 9, 2005 2:36 PM CDT
We're back from our road trip to Wisconsin! The 8 hour trip home took closer to 10 due to a bad (12 vehicle including 2 semi trucks) accident on I-74, but the kids handled it very well. I have a terrible sense of direction, but decided to try to get around the highway by taking country roads. I went way out of my way and probably didn't save any time, but it was better than sitting there on the highway for an hour, plus we saw some beautiful scenery.
Patrick remained fever-free for the remainder of our trip. I wish I could say the same for cousin Allie --poor little girl was burning up during our day at the Dells. She's the happiest sick kid I've ever been around! In spite of Allie's fever, we all had a blast at the Dells. The kids played for hours in the hotel pool, waterpark and arcade. HOw's this for a small world....we ran into a family from IHM School at the Culver's in the Dells.
Up in LaCrosse, Katherine went to school with cousin William. The best thing about his school, according the Katherine, is that you get to pick out a drink after recess and drink it during the next class.
It was great seeing everyone, but it's even better to be home--we all missed Tom, Schmetty and Olivia.
Sunday, April 3, 2005 7:10 PM CDT
Greetings from the Greater Chicago Area….. The kids are on spring break this week, so we’re road tripping to visit grandparents in and around Chicago and aunts, uncles and cousins in Madison and LaCrosse, WI.
Patrick is now fine, but had a rough day. He woke up before 6am coughing with a fever of 102.4. I knew this usually means an automatic trip to the ER, but called our Hem/Onc Nurse Practitioner in Indy just to make sure….Sure enough, we ended up spending 8 hours at the LaGrange Hospital Emergency Room. I chose that hospital because it’s just a 3-minute drive from my Mom’s house. They were very nice there, but we’ve been spoiled by Riley Hospital. I don’t think they see many kids—especially those being treated for cancer. They just could not get the port accessed. That’s always the worst part of an ER visit, but this was one for the books.
The first attempt at accessing the port cause Patrick so much discomfort (in spite of numbing cream) that the needle had to be removed immediately. An hour later a different nurse attempted to access the port. This time the needle went in right away with no pain, but the darn thing would not allow a blood return (meaning it wasn’t in correctly). Another hour goes by and this time they bring in the head IV nurse. She gets the needle in and everything looks fine but when she starts flushing with saline, Patrick’s port starts to blow up like a water balloon—it was infiltrating and instead of going into the port, the saline was going under his skin. It scared the daylights out of me as this has never happened to him – it looks more dangerous than it is. We decided that we’d exhausted our port access options. The only other option was to take blood peripherally from a vein in his arm. He freaked a bit upon hearing that because the last time they tried getting blood from his veins was during liver failure and his veins kept blowing.
Patrick and I honestly just wanted to get the heck out of there at that point. His fever was down and he claimed to have “never felt better” in his life! We would have left against medical advice, but our Indy NP encouraged us to stay for the blood culture and IV antibiotics. So….a tech came in and did a mercifully quick job of getting a needle in Patrick’s little arm. Before she stuck him, I made it clear that since he’d need the IV antibiotics, we wanted them to start a peripheral IV to take blood and leave the needle in for the IV antibiotics (anything to save him from extra needle sticks!). I think we had some miscommunication and the ER doc nixed leaving the needle in and said she wouldn’t give antibiotics unless the blood work showed the need for them. I can understand not wanting to just hand out antibiotics for the general population, but when a kid on chemo gets a fever, IV antibiotics are par for the course.
Anyway, the blood work came back and everything looked good, so we thought we were on our way out the door, when the ER doc came in and said ” Bad news….he needs to stay for IV antibiotics”. Well…I guess I kind of knew that. So this time we poked him on the back of his hand. He screamed like crazy, but once the needle was in he was very brave. We ran the antibiotics and then headed straight to Toys R Us to pick up a few “rewards”. Patrick got a Flywheel toy and an inexpensive video game and Katherine got a game called Sequence.
One other thing—the ER nurse told me that Patrick’s ANC (immunity level) was 830 (low) which coupled with his fever made it look like we’d need to withhold all chemo until his counts improved. Well, when we got home, I looked at the printout they gave me and realized they were looking at the wrong lab value. His ANC not a low 830, bit rather a very wonderful and healthy 2600! He’s fit to restart chemo tomorrow, but we’ll still go back to Riley on Monday the 11th to double check all of his counts.
I don’t mean to bash the good folks at Lagrange Hospital (they were very nice), but this experience really made me appreciate Riley and realize once again how lucky we are to live a few miles away from such a great hospital. And thank goodness that wherever we are I can just pick up the phone and talk to our NP in Indy and make sure that we’re doing the right thing for Patrick. More detail than anyone wanted, but it was a harrowing day and I for one feel much better having vented a bit. Patrick, the resilient soul, just downed a milk shake and is now playing Clue with Nana and Katherine.
We’re looking forward to a much healthier and more fun remainder of our vacation including a side trip to Wisconsin Dells where we’ll stay with Aunt Ginger and her kids at the Atlantis Hotel/indoor water park!
S
Friday, March 25, 2005 6:25 PM CST
Thank you for signing my page. It was a nice surprise for me. I hope you like my Easter bunnies on my page. My back feels much better today so I went to school today. I got to go see the movie "Robots" with mommy after school. It was a good movie. There are only 2 more day until Easter. Katherine doesn't feel well so she's upstairs resting. Mommy and I are watching Ella Enchanted. It is a good movie. We're at the Ogre part of the movie now.
Good night. Love, Patrick Maxwell
Dictacted by Patrick (typed by Mom)
Thursday, March 24, 2005 8:29 PM CST
Hi everyone:
Patrick had clinic first thing this morning for spinal and IV chemo. It’s so nice being in Maintenance where we have our normal lives back, but we get to go back and visit our absolutely wonderful nurses, NPs and doctors at Riley….And Patrick feels so darned good! No more puking at the mere sight of a syringe of saline.
We had several clinic bonuses today—a visit from Patrick’s special friend, Mindy, our former patient tech who is now a nurse-in-training and Sweet Aunt Mary stayed with us for almost the entire visit—she makes things so fun and helps distract Patrick from the few unpleasant parts of the visit. I was also happy to see a little boy we met while inpatient late 2003. He was diagnosed with stage IV neuroblastoma and is now looking like a million bucks. I recognized his mom right away, but never would have recognized this healthy looking boy with the beautiful head of hair. It’s just great seeing these kids who come through in spite of not so great odds. We also ran into a very nice family we meet at the Sibling Day that Riley Hospital hosted. The son was just diagnosed with leukemia in February and it reminds me so much of Patrick during the initial stages of treatment and I just want to tell them it will get better, it’ll probably get worse before it gets better, but it WILL get better.
Anyway, then social hour ended and it was time to go back to the exam and procedure rooms…..Patrick had a good visit today, but had a hard time with the spinal tap—you just never know how that’s going to go. It took many attempts to get the needle in, which was hard to witness, but thankfully, he was under the influence of versed, so he doesn’t remember it clearly. Our nurse commented that they should give the parents (and aunts) versed too…..hmmmm…He’s been in bit of discomfort since the procedure, but nothing that a quite afternoon at home and a new video game couldn’t cure.
Patrick’s liver panel looked good—a little high, but not out of ordinary for a kid on chemo and better than it was a few visits ago. Everything else (hemoglobin, WBC, platelets) looked GREAT. His ANC (infection fighting ability) was a little lower than usual (about 900), but within the range of where we want him to be during maintenance. We’re going to go back from more blood counts in a couple of weeks just to make sure that his ANC doesn’t drop much more—if it does, they’ll probably just adjust his chemo.
The kids and I are looking forward to the long Easter weekend and to our Spring Break Trip to visit our Chicago and Wisconsin relatives. Thanks to those of you who drop a line in Patrick’s guest book and also to those who just check in from time to time.
S
Sunday, March 20, 2005 6:24 PM CST
i lost a tooth at daniels house when my sister nokt it out. it was my 7th tooth. i got 1 doler from the tooth fary.it was a supriys for me.thank you for sining my page.love patrick.
************************************************************
We had a very busy and fun weekend. For the record Patrick's tooth was already very loose and Katherine just helped the process along. Take care!
Sarah
Thursday, March 17, 2005 1:28 PM CST
Happy St. Patrick's Day!
Patrick marched in the parade today along with his fellow IHM 1st graders. It was a beautiful day for a parade--sunny and in the 50s. Patrick rejected my offer to walk with him, so I stood on the sidelines with Grandma and Grandpa and managed to get a few pictures (which I'll try to post soon).
I'm sure you'll hear much more on this subject from Patrick later on today.
S
Tuesday, March 15, 2005 4:38 PM CST
There is a VERY disturbing article in the Wall Street Journal about a nationwide shortage of injectible methotrexate (MTX) which is key to the treatment of leukemia, NHL, osteosarcoma and other illnesses. Dr. Fallon, the head of our HemOnc department at Riley is quoted in this article.
I think this shortage only applies to the high dose methotrexate that the kids get early in treatment. If that's correct, then it won't affect Patrick; he takes oral MTX weekly and is scheduled for his next spinal MTX injection on the 25th.
I feel just terrible for the parents of the kids who are early in treatment and desperately in need this life saving drug. After all the leaps and bounds made over the past 20 years to increase long term survival for pediatric cancer patients and then something so avoidable puts lives at risk.
GRRRRRRR.
I think the link will be active for 7 days if you want to check it out. If the link is inactive and you want the article, let me know and I'll email the text to you.
http://online.wsj.com/article_email/0,,SB111085415351479585-IRjgoNllal4oZyqaXqHbaqDm4,00.html
Sunday, March 13, 2005 5:49 PM CST
I hope everyone had a great weekend; we did! Katherine had a couple of girls sleep over here on Saturday and Patrick spent the night at Daniel's house. Tom took the boys to a high school basketball game before going to D's house and they had a blast. In spite of 10+ hours of sleep, Patrick is exhausted and heading to bed in the next half hour or so so he can be bright and cheery tomorrow.
In keeping with tradition, the IHM first grade (Patrick's class) marches in the Saint Patrick's Day Parade on the 17th. When Katherine marched 2 years ago, it was 70 degrees and sunny (we're expecting high 30's). Grandma and Grandpa took Patrick to the parade and he came home with a HUGE bag of candy that he was able to catch from the marchers. Grandma and Grandpa also took him to McDonald's which proves that there are advantages to being the youngest of 10 grandchildren.
Goodnight and now for a word from Patrick
i hope you ipresheat the note. ples pray for the kids at the hopsital.love patrick
Thursday, March 10, 2005 7:07 PM CST
this is patrick. thank you for writing the stuff to me. i am
having a sleepover with daniel saderday. i cant wait. it will probly be fun there.we will play playstaton. love patrick.
bye
okaaaay....that was Patrick. He really wanted to say thanks for all the journal entries, but he also wanted to prolong the bedtime routine.
Thursday, March 10, 2005 3:14 PM CST
Warning! The following is a long entry. Since it took me so long to create a web page for Patrick, I thought I'd insert a series of e-mails we sent to family and friends during the first part of Patrick's treatment to give a sense of history.....
First email sent by Tom 2 days after Patrick’s diagnosis
5/14/03
First the bad news: Patrick was diagnosed with leukemia on Monday, and it doesn't get much worse than that. Now the good news: He has the variety of leukemia known as ALL which, as I have learned, is much less bad than the other kind, AML. Also, he seems to be responding exceptionally well to chemotherapy, and after only one dose his white blood cell count has returned to normal. Also, they have found that the fluid in his spinal cord is clear, which means that the disease has not spread to the spinal column and that he will not need radiation treatment on his spine and brain, which is a huge break in our favor. Finally, the type of leukemia he has, when combined with his age, is highly treatable with a cure rate of around 75-80% (although we are repeatedly told not to rely on statistics and that each case is different . . . ) Still, all in all, this is something that we fully expect Patrick will lick.
Sarah noticed some symptoms on Patrick that I simply would never have picked up on and brought him to the doctor on Monday at 1:00. She told
the doctor she was concerned that he might have leukemia, and the doctor quickly agreed and sent them off to Riley. By 2:00 he was admitted to the cancer ward. That night, the course of treatment was explained to us, and later that night (or maybe Tuesday morning, I can't really remember), the doctors were off and running. He had his first dose of chemotherapy last night and, as I said, seems to be doing very well. For the most part, he is handling everything very well except for the couple hours after he takes a dose of medicine. I pick up Katherine at school at 3:00 and bring her by the hospital to spend a few hours with her brother every day. She has spent the first couple nights at my parents, but Sarah's mom is staying at our house now, so Katherine went home with her tonight. I stopped at my office on my way home from the hospital to write this message. Before tonight, I have been going home late in the evening to sleep in bed. Sarah has been staying in the room with Patrick.
We are very happy with the quality of care we have gotten at Riley. We
think that Patrick will be there for a few more days and will be sent home on Saturday. From there, he will have six months of chemotherapy of varying strength - strong at first, and then gradually weaker, and then the process will be repeated. After six months, we expect that he will be "cured," but the regimen requires that he be regularly monitored for 2 1/2 more years. There's not much more I can say at this point. Sarah and I are both exhausted, but we have been overwhelmed by the courtesy and generosity of our family and friends. And we are truly optimistic about Patrick's outlook. As we read in some of the material, if you have to get cancer, there is none better than ALL leukemia between the age of 3 and 6, at least statistically speaking, although I'm sure Patrick would beg to differ. I'll try to keep everyone updated whenever I get the chance. Until then, please keep Patrick in your thoughts.
Tom
Fri, 13 Jun 2003
Yesterday marked one month since Patrick's diagnosis, and his treatment is proceeding according to schedule. He has been going to the hospital every Wednesday for chemo and, fortunately, has largely avoided the bad side effects you would normally expect. In addition to chemo at the hospital, he has been taking three doses each day of prednisone, which is a steroid that is typically prescribed for asthma or arthritis. The prednisone has made him ravenous and he is constantly eating. He will typically eat several bowls of cereal and four toaster waffles each morning for breakfast, and is then ready for lunch a couple hours later. He has gained somewhere around 10 pounds in the past month and is working on a double chin, although some of that is probably water retention, which is another side effect of the prednisone. He is currently being weaned off of the stuff and, by next week, will no longer be taking it at all - which is all part of the protocol.
And as for the protocol, it seems to be working. We were told on Wednesday that Patrick is officially in remission - meaning that there are no detectable leukemia cells in his body. While this is great news in its own right, its true significance is that it means we can continue on to the next stage of the protocol that was laid out for us last month. We were told that before we can go to the next stage, Patrick needs to be in remission and his blood counts need to come up to normal by next week. Without going into the details of what that means, suffice it to say that most of his blood counts are already back to normal, and the ones that aren't are moving in the right direction and should be where they need to be on time. In fact, one of the more important components of his blood count, his ability to fight infection, has returned sufficiently for him to be around other kids.
Patrick is really handling everything very well. For example, he seems to understand that he needs to take his medicine, which tastes like crap, and although he may delay the inevitable dose, he does not fight it. And that has made our lives immeasurably easier. We have learned that each phase of the treatment regimen presents its own challenges, but it looks like we have passed through the first one with flying colors. I'll keep you posted as we move on to the next. As always, please keep Patrick in your thoughts and prayers.
Tom and Sarah
7/1/03
Hi Everyone: I can hardly believe it but Patrick has spent part of the past two days at IUPUI Day Camp. This is a day camp about 5 minutes from my office door on the IUPUI campus. The children get to choose 3 “specials” per day (such as Art, Reading, Math, Board games, Soccer, Tennis Volleyball, etc) in addition to swimming at the IUPUI Natatorium. He was very uncertain and overwhelmed and quite intimidated at first (think about it—he’s been a Mama’s Boy for the past 7 weeks) but the outcome was what I was hoping for. When I picked him up today he said “I want to go to specials camp every day!”
Funny thing happened yesterday. When I picked Patrick and Katherine up I noticed that Pat’s cheeks were very rosy. I asked him what he had been doing and he replied with an impish grin, “playing tennis”. This was a surprise to me since I had signed him up for sedentary activities such as reading and art. Katherine informed me that the tennis instructor called a different Patrick’s name, so he went by accident but had a great time. Nonetheless, I told Pat we need to hold off on exerting ourselves in the sun, so it was back to reading today.
Patrick is on day 11 of the 5 week Consolidation phase of treatment. He takes chemo (6MP) by mouth every night, gets chemo (Ara-C) via the port 4 days per week. For the uninitiated, the “port” is a portal and catheter implanted in his chest. The catheter goes through a large vein near his neck to deliver the meds to the right atrium of his heart. Personally, I love Patrick’s port. All the nurses need to do to get blood or give meds is one relatively small needle prick into his chest versus lots and lots of IV sticks in the arm. Nurse Maxwell (that’s would be me) gives him his chemo via the port 3 days per week. Patrick doesn’t seem to share my enthusiasm but he would if he knew what the alternative was! On our clinic day, which is now Friday, he gets one type of chemo into the spine and a different one into the port. He will sometimes get shots into his thigh muscle, but thank goodness we only need to do this a couple times per month. One of the most important things about our clinic day is we get Patrick’s blood counts. Our lives pretty much revolve around what this lab work shows. This is when we find out if we need a transfusion of red blood cells (Pat needed one last Friday), or platelets. It also reveals what his ANC or infection fighting ability is. A normal kid has an ANC of 1500 or more. If it is below 1000 he is considered neutropenic (at risk for infection) 500 or below and he is considered severely neutropenic. As of Friday (6/27) Patrick’s ANC was 700. The oncologist gave me his blessing to send him to camp as long as long as Pat feels up to it (which he clearly does!). The only condition is that Patrick has to wash his hand frequently throughout the day and he can’t be around anyone who shows signs of a cold, etc. Patrick has always tried to get away with minimal contact with soap and water but he is making the adjustment with the help of antimicrobial hand wipes (the ones that smell like water melon and cost about 90 cents each).
Patrick is handling this phase of treatment remarkably well. He has so much more energy than he did during the first month (Induction phase). He spent four of the past 6 nights catching lightning bugs with Katherine and neighbors Ryan and Leigh. He really seems to be back to his charming, silly playful old self for now and we are enjoying these days immensely. Most of the Indy Maxwells are heading off to Wisconsin to celebrate Independence Day and some very important July birthdays. Patrick and I will stay here to have our clinic day and to do something special (I don’t know what yet).
So I want to wish you all a happy 4th, Bastille Day, Birthday to Grandpa Charles, Meg and Kitty (I’ll forward this to you after your surprise party)
I also want to take this opportunity to make a plug for the kid cancer stamp. Please take a minute and sign this CHILDHOOD CANCER AWARENESS POSTAGE STAMP
Petition. I promise it is not one of those annoying chain letter things!
http://www.thePetitionSite.com/takeaction/928701473
Please help by signing this petition. It takes 30 seconds and will really help.
Love to all!
Sarah
Post Script: We ended up taking Patrick out of camp the next week because it really was too much for him. He spent the rest of the summer with his wonderful babysitter, our neighbor and friend, Cindy W., and he was much happier.
After our discharge from Riley inpatient stay due to methotrexate toxicity.
10/09/03
Patrick and I had enough of that place and we busted out of there this afternoon at about 4 pm. It is so good to be home. Katherine was very cute. She hovered over Patrick for the first hour we were here. He was just eating a bowl of Rice Krispies—didn’t seem that interesting to me, but then again, I’ve been watching him like a hawk all week!
He is still leaking cerebral spinal fluid from his spinal tap site (on 9/29), but Neurosurgery said we could take him home on the condition that he stays on strict bed rest until the hole seals which we hope will be in the next 48-72 hours. Our discharge was timely because the unit suddenly became filled to capacity. We got a roommate early this morning; a12 year old boy in sickle cell crisis. The poor kid was in so much pain. I felt awful for him and his grandma. What a feeling of helplessness she must be feeling to not be able to take away his pain. It makes me feel lucky in a way to have a kid with a curable disease.
Anyway, here we sits waiting for Clarian Home Health Care to come with the first delivery of Patrick’s feed bags (Hyper-Al/V nutrition). He’ll get 75% of his nutritive needs every night over 12 hours with the hyper-al. We’ll take it week by week, but they guess it will take about 4 weeks of hyper-al for Patrick to catch up after being so malnourished. We’re also going to give Patrick a minimum of a 2 week break from chemo. I don’t think I’ll ever be ready for him to get another spinal tap, but unfortunately, at some point soon he’ll need to (darn!).
Well, enough complaining. It is so good to be in our own home, with our own dirty dishes and our own clutter. YAY!
Throw away the phone number to our hospital room!
Love, Sarah
About a week after Patrick started t “turn the corner” and recover from liver failure
12/23/05
Hi Everyone: Patrick continues to defy the odds and get a little better every day. His biliruben is down to 6.4 from a high of 14.6. Other labs remain stable. The docs want to see his blood clotting studies improve before they will declare Patrick "out of the woods". The official word is that we're still taking the decision to list him for a transplant day by day, but I think we all would be shocked at this point if things came to that.
Patrick has been having more pain in his belly than expected for his diagnosis (fulminant liver failure), so the docs ordered a CT scan yesterday. It showed an accumulation of fluid, as expected, and a few other little things like colitis, inflamed gall bladder, small amount of fluid in the lungs. They're going to adjust his antibiotics to ensure we're covered for all of the above. He actually nibbled on a Riley cafeteria chicken finger today--the first solid food he's had since December 7th!
Other great news! After only 3 doses of GCSF to stimulate his white blood count, his ANC is up to 1900! This means he's not neutropenic for now and that he will have a better chance of fighting off any nasty bugs that come his way. His constant fevers are GONE! This gives me great relief.
We want to send a special thank you our friends, co-workers, neighbors and fellow IHM parishioners for the prayers and kind gestures during this time. We are blessed to have you in our lives.
Tom and I will keep you posted on Patrick progress. Happy Holidays!
2 days before being discharged from Riley Hospital
12/30/03
Hello Everyone!
We've been so busy getting better, that we have not had time to update you on Patrick's progress. It has, to say the least, been remarkable. We were transferred to a normal room on the Hem/Onc Unit on Sunday because Patrick no longer required a nurse all himself (we miss you, though, CRYSTA!). Monday morning, Patrick's labs showed that his blood clotting studies were improving-- our PROOF that Patrick's liver is working. Patrick has been up and out of bed and walking around and playing in the play room. AND NOW FOR THE BEST NEWS OF ALL..... Our Hem/Onc doc just came in and told me that we're going to aim for discharge on Thursday, 1/1/04! What a way to begin 2004!
If they let us go on Thursday, he'll need to come back every other day or so for labs and to check overall progress. Our challenge now is getting him to eat and keep food down. The IV nutrition, which he is now relying on, is bad for his liver, so we need to wean him off of that over the next two weeks, and possibly place a G-tube into his belly if he can't get enough calories in orally (but we won't worry about that now).
All we're thinking about now is getting home and back to normal and, of course, how lucky we are that Patrick has rebounded in spite of a pretty dismal initial prognosis. We're grateful to have friends and family like you. Your prayers and support have sustained us through the most difficult time of our lives.
A HAPPY AND HEALTHY NEW YEAR TO YOU ALL!
Love, Sarah
1/9/04
Patrick had a spectacular day today. You can tell he’s no longer feeling liver-sick and that he’s been chemo-free for a month! He was actually kind of hyper and very goofy all day. We started the day getting blood work at clinic. While we waited for his results to come in, Patrick roamed the halls of clinic demanding hugs from about 12 of his favorite nurses (no fibbing!). After clinic, Pat accompanied me for a brief stop at the office, which lasted several hours. He was having so much fun typing his name over and again on the typewriter, flirting with the office staff, informing Becky when her phone was ringing and then giving her a pink slip, that he didn't want to leave. I finally got him out of there by informing him that Kits and Kiboodles (which carries his favorite connect-the-dots books) was going to close soon. After a quick visit to get Katherine at Cindy W.’s (our kids' home-away from home) he had a manly meal of steak and noodles. Since he's eating and drinking an acceptable amount, we’re going to take him off of the liver-annoying IV nutrition and he will not need a G TUBE!
Patrick's blood work results were great; they showed normal hemoglobin, platelets on the rise, and his liver panel was very good. His biliruben is NORMAL! We go back on Monday to double check everything and if we can get his platelets and ANC (infection fighting ability) up a little more, we'll make an appointment to resume chemo (Cytoxan via spinal tap) a week from today! I see this as a huge milestone--we're no longer worried about a failed liver, but can now talk about our old friend, leukemia. Dr. Lee has very carefully considered which chemo is safe to give him and in what dosage. If he tolerates the initial meds and when we're confident that his liver is fully recovered, he'll start on his original less liver-friendly protocol of Methotrexate, 6MP, Prednisone and Vincristine, but, of course, he’ll be monitored closely.
As you can imagine, we're so grateful for the way things have turned out for Patrick. We have a new perspective on life and a greater appreciation for our family, friends and neighbors. I don't think we can thank every one of you enough for being there for us (in person, on the phone, via the internet or snail mail), but we'll try-- THANK YOU!
I have attached a picture of Patrick taken a day or two ago to show how good he looks. The hat NEVER comes off and our house has been taken over by fluffy Care Bears in more pastels colors than we new existed.
With love, Sarah, Tom, Katherine and Patrick
Wednesday, March 9, 2005 8:09 PM CST
Well…it’s taken me almost two years to create this Caringbridge website. I just never had time to sit down and do it before (of course, I didn’t realize how easy it was). Bear with me while I get the hang of inserting photos. I finally learned how to compress them enough so they’ll fit, but ugh, the quality leaves something to be desired. Feel free to offer any tips!
Anyway, most of what I post from now on will be boring …at least that’s my hope! Patrick has been on long-term maintenance for just over a year now and will continue treatment until July 2006. While in some ways that seems like forever, we’ve got the routine down and this phase of treatment is so much easier than those first 7 months were. He takes his oral chemo at home every night and goes once a month to the clinic for IV vincristine (via the port in his chest). He gets chemo in his spine 2 out of every 3 months (although that’s going to change to once every 3 months soon), and he takes prednisone for 5 days once a month. He also takes septra 2 days a week am and pm to prevent pneumocystis pneumonia (PCP), he’ll have to continue the septra for 6 months or so after going off treatment. Unfortunately, Patrick still is not able to swallow pills so he chooses to chew each tablet and swallow it down with water (yuck). We struggle a bit on Friday nights because he has to take 8-12 pills. Fortunately, the painful part of his treatment is long behind us (no more intramuscular PEG shots in the thigh) and his treatment is basically pain-free. I put a numbing cream called emla on his port before it is accessed, and when he has his spinal taps, he’s dosed up on morphine and versed (so he doesn’t remember the procedure).
The bottom line is that Patrick is thriving. He weighs almost 48 pounds and is just shy of 4 feet tall. The chemo does not seem to have stunted his growth! I need to sign off for now. Thanks for checking in on Patrick! He would love it if you’d take a moment to sign his guestbook.
Wednesday, March 9, 2005 8:09 PM CST
Well…it’s taken me almost two years to create this Caringbridge website. I just never had time to sit down and do it before (of course, I didn’t realize how easy it was). Bear with me while I get the hang of inserting photos. I finally learned how to compress them enough so they’ll fit, but ugh, the quality leaves something to be desired. Feel free to offer any tips!
Anyway, most of what I post from now on will be boring …at least that’s my hope! Patrick has been on long-term maintenance for just over a year now and will continue treatment until July 2006. While in some ways that seems like forever, we’ve got the routine down and this phase of treatment is so much easier than those first 7 months were. He takes his oral chemo at home every night and goes once a month to the clinic for IV vincristine (via the port in his chest). He gets chemo in his spine 2 out of every 3 months (although that’s going to change to once every 3 months soon), and he takes prednisone for 5 days once a month. He also takes septra 2 days a week am and pm to prevent pneumocystis pneumonia (PCP), he’ll have to continue the septra for 6 months or so after going off treatment. Unfortunately, Patrick still is not able to swallow pills so he chooses to chew each tablet and swallow it down with water (yuck). We struggle a bit on Friday nights because he has to take 8-12 pills. Fortunately, the painful part of his treatment is long behind us (no more intramuscular PEG shots in the thigh) and his treatment is basically pain-free. I put a numbing cream called emla on his port before it is accessed, and when he has his spinal taps, he’s dosed up on morphine and versed (so he doesn’t remember the procedure).
The bottom line is that Patrick is thriving. He weighs almost 48 pounds and is just shy of 4 feet tall. The chemo does not seem to have stunted his growth! I need to sign off for now. Thanks for checking in on Patrick! He would love it if you’d take a moment to sign his guestbook.
Wednesday, March 9, 2005 11:19 AM CST
This page has just been created. Please check back for additional updates.
Click here to go back to the main page.
----End of History----
| Donate | How To Help | Partnerships | Contact Us | Help | Terms of Use | Privacy Policy | |
|
Copyright © 1997 - 2004 CaringBridge, a nonprofit organization, All rights reserved. |