Journal History
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Thursday, May 29, 2003 6:33 AM CDT
HAPPY, HAPPY BIRTHDAY NATHAN!!!!!! We love you very much.
My little boy turns three today. It is so wonderful to see him healthy & happy. I love having a son who's a very rugged boy that loves to cuddle.
Nathan just had a check up with Dr. Pelidis last friday, May 23rd. Everything is looking good & his urine test results should be in 2 weeks from now. Dr. Pelidis said that after September's scans, Nathan should not need any more additional scans ever. They will just follow up with bloodwork & urine checks. I am so psyched that the scan torture is almost over. We were told that after two years of NED it is very unlikely that his cancer will return. So we are anxiously waiting for the fall & we pray she is correct.
Please provide postings to Nathan's guestbook because I will be closing the WEB page once the fall comes. I will give Nathan a full copy of this WEB journal & guest book when he is old enough to understand. So I would like your notes to show him how loved & lucky he is to have such a great circle of family & friends.
Thanks,
Bridget
Wednesday, April 30, 2003 12:24 AM CDT
Hi Everyone,
Sorry it has taken me so long to deliver the GOOD news. Nathan's CT scan has come back clear. Nathan is still cancer free. We are so excited & can finally breath a sigh of relief for another six months.
Don & I have decided not to do the MIBG scan this week. Since his other scans came back clear, we didn't think that it was right to torture him with another session of needle pricks & anesthesia.
Now we can move on to normal life issues such as potty training. Nathan is almost there but he won't go on his own. When it suits him, he insists that he is still a baby & not a big boy. We have even tried all forms of incentive such as bribery, candy, toys etc... and he just doesn't care. I am hoping that we can accomplish potty training by his birthday, May 29. We'll see, but its a good goal.
Take care everyone & I'll be in touch.
Bridget
Thursday, April 24, 2003 8:29 AM CDT
Hello Everyone,
The past week has been very hectic for us.
Wednesday, April 16th was Kearsten's 5th birthday. We actually celebrated her birthday on the previous Sunday because we knew that Nathan had his scan scheduled for that day. We tried to keep her day special by spreading it out over the week, so I don't think she felt slighted by the attention that Nathan received.
Nathan also had his bone scan on Wednesday which was a very long day for both Don & Nathan. First to the clinic for IV placement & blood draw which is torture to Nathan. He just sees a needle & freaks out. After the IV is in, he goes to the nuclear medicine department for the bone scan injection which must be administered 2 hours before the scan. Don & Nathan pass the time with Legos. Nathan was under anesthesia for 1.5 hours to complete the scan. As usual Nathan was very unstable after coming too so Don had him ride in the front of the truck so he could keep an eye on him. Don & Nathan got home about 7:30pm. After being home for 1 hour, Nathan decided he wanted a McDonald's happy meal. Being guilt a ridden parent, I quickly ran out & got him a chicken tender meal which he ate completely. Just goes to show you that if you starve your kid all day, they will eat dinner.
On Saturday, April 19th, more torture for Nathan. It was time to start his re-immunizations. He got 4 shots in his legs & wasn't very happy at all. Thankfully he got several stickers for his bravery & they seemed to distract him. But you can be sure, that as soon as we got home, Nathan tattled & told his Daddy that he got shots & they hurt. But he was soon distracted & got over it.
Sunday was Easter and it was a gorgeous day. The kids had a blast. They got to do three different easter egg hunts (home, Roxanne's & Terri's) and received many different baskets. Kearsten celebrated her birthday with the Pichette family & received many very nice things. She got lots of dresses which she loves and she & Nathan have been playing tea party for days.
Wednesday, April 23rd, time for the CT scan. Nathan & I leave for Boston by 6:15am. He always knows when he is headed to Boston & he immediately starts saying anything to go home "I want to watch TV with Daddy", "I miss Kearsten", "Boston doctors are mean", "Turn around please", etc..... We are in Boston at 7:30am and immediately go to the CT department & the battle begins. Nathan can't stand the constrast fluid, first we try it in apple juice which is a NO GO then we try it in fruit punch still bad but there are no other options so I had to force him to drink it. It is very difficult to make a 2 (almost 3) year old drink something that tastes bad. I had to use a syringe, squirt it in his mouth & make him swallow it while trying to distract him with a Blue's Clues show on. It took 2 hours to get most of the contrast in him, but it was starting to make him vomit. I stopped & told them that was all I would give him & they had to do the scan as is. Unfortunately, we still had to put in his IV for the other contrast which resulted in more screaming. I didn't want to put Nathan through any more torture so we tried the scan for the first time without sedation. NATHAN WAS SO BRAVE. After we showed him the CT machine & how it worked and that it wouldn't hurt him, he laid on the table really still while the nurse & I held his arms & legs so we could complete the scan. The CT scan was over in less than 15 minutes & it was the first time Nathan could walk out of the CT department. It was great & I was so proud of my little man.
Some Good News:
I stopped by the clinic to get the bone scan results, but Dr. Pelidis was doing rounds so I left her a message to call us. Finally that afternoon she called us & Nathan's bone scan looks great & is negative. Now we are waiting for the CT results. If the CT results come back fine, Don & I have decided not to do the MIBG scan. We don't want to put Nathan through another scan if Dr. Pelidis agrees with us. So stay tuned for CT results.
Thanks for checking in and for everyones continued prayers for Nathan. It has worked & kept this monster away from him.
Love,
Bridget
Friday, March 28, 2003 6:43 AM CST
Hello Friends & Family,
One of our friends commented that it has been a long time since I’ve updated Nathan’s web page. Actually I didn’t realize that I haven’t updated since September, 2002. Well, it is six months later & I have no excuses except for the fact that I refuse to dwell on that period of our lives or to succumb to the fear that Nathan’s cancer will return. (Also we were busy as hell with the new house) But, it is scan time again so we are reminded of how far we must go before Nathan is considered in remission (5 years).
Nathan’s appointments are as follows:
April 16 Bone Scan (This is also Kearsten’s birthday)
April 23 CT Scan
April 29 MIBG Injection
April 30 MIBG Scan
On a more upbeat note, this page is to keep everyone in touch with us (the good & the bad) so I will say that “life has been wonderful to us!” Both of the kids are growing like weeds & are very healthy. Our house is now completed & we moved in on January 25th. (which happened to be the only weekend above freezing in January). We are so happy to finally be in after a year of planning & hard work. The kids love their large rooms, the basement for bike riding & playing in the yard.
Our new address is: 8 Heron View Drive, Hooksett, NH 03106
Phone number is the same.
Family update: Hannah Charolette Brown has joined our family. She & Mom is doing fine. Roxanne & Mike are very proud & happy these days as they should be with such a beautiful little baby.
I will provide new pictures in a week or two so you can all see how big the kids have gotten. I will also update you on information as the scans progress, but I’m sure they will all be NEGATIVE. (meaning no signs of disease).
Thank you for always keeping Nathan in your thoughts & prayers. We appreciate it more than you’ll ever know.
Love,
Bridget
P.S. As I was writing this & looking my most recent pictures of the kids in my office, I noticed a little clipping that I saved several years ago & I’m going to share it with you.
WORDS TO LIVE BY:
To laugh often and love much, to win the respect of intelligent people and the affection of children; to earn the appreciation of honest critics and endure the betrayal of false friends; to appreciate beauty, to fine the best in others, to give of oneself; to leave the world a bit better whether by a healthy child, a garden patch, or a redeemed social condition; to have played and laughed with enthusiam & sung with exultation; to know even one life that has breathed easier: THIS IS TO HAVE SUCCEEDED.
Ralph Waldo Emerson
Monday, September 23, 2002 at 12:50 PM (CDT)
Hello Everyone,
Nathan's preliminary results are in & it appears that Nathan is cancer free. He & Don had a difficult day on Wednesday (9/18). Nathan was sedated for longer than usual due to the machine breaking down & having to redo many scans which caused a lot of worrying. Also the additional sedation made Nathan nauseated & he vomited in the car on the way home. Next day, he was back to his loving self.
We are also waiting for the urine tests to come back, but the importance is less now that the MIBG scan has come back negative. We will keep you posted on where we go from here.
Take care & thanks for the prayers.
Bridget
Wednesday, September 11, 2002 at 06:19 AM (CDT)
Hello Everyone,
Good news yet again. Nathan's CT scan has come back negative as well. The scan covered his abdoman, chest & pelvis areas. Had small problem with the IV which resulted in a leak under the skin, but thankfully it appears to have been only IV solutions & not the CT contrast solution. Contrast solution is toxic to tissue other than blood & veins so we were watching for blackening skin or blisters. Thank GOD there was none. It was obvious that the anesthesiologists were worried because they keep coming to check his wrist while we were in recovery. Sedation & recovery went well, so other than a torturous (kicking, pleading & screaming) ride to Boston, Nathan faired quite well. As upset as he was, it is apparent that he has already forgiven me for bringing him to Boston & is back to his lovable self & full of kisses. Kids are truly wonderful.
Two down only 1 to go. MIBG scan is next Wednesday. Remember that it is the most specific for neuroblastoma & covers the entire body. I will be extremely relieved when we receive the good news next week. I refuse to take the low road & will keep positive thoughts.
Talk to you soon,
Bridget
Tuesday, September 03, 2002 at 01:19 PM (CDT)
Hello Everyone,
Good News! Nathan's bone scan came back negative which means that there is no sign of cancer in his bones. We are so excited. 1 test down & 2 left to go, so please keep those good thoughts coming Nathan's way.
CT scan on Sept 9th
MIBG scan on Sept 18th
Gotta go so I'll talk to you later,
Bridget
Thursday, August 29, 2002 at 08:14 AM (CDT)
Good morning Everyone,
As many of you may know by now, we are an extremely blessed family. We found out on Friday that Mike had broken a vertibre in his neck during a bad fall two weeks ago while mountain biking with Don, Rich & Chad @ Pedro's festival, but did not know it. After noticing that his arms were getting numb, he went to the clinic to have it looked into on Friday. He was immediately admitted to the hospital & immobilized until his neck surgery on Monday. Fortunately, the surgeon's were able to remove the bone fragments & fuse bones C6 & C7 together without any complications. He is now healing from surgery at home & we are hopeful that he will regain all feeling & strength in his arm. We are so lucky that Mike did not get paralyzed.
Yesterday, Nathan went to Boston for his bone scan. Fortunately, we had Debbie Brown (Mike's mom) with us so Nathan was distracted by the fact that he was going to the airport & not the hospital. We dropped her off, then went to our appointment at 12:00pm.
Nathan was only upset during the insertion of the IV, because the nurse had to try several times to get a vein. After it was in, Nathan got the bone scan isotope injection & we went to play for a few hours. Nathan was so good & didn't complain about being hungry. He only asked for a drink a few times, but I was able to distract him. We returned for the scan at 2:30pm. He wasn't psyched to see the doctors, so the anesthesiologist gave him propofal which knocks him out very quickly. He came out of sedation pretty good & after 1 hour in the PACU, we got to go home.
We will let you know the results as soon as we get them. Our oncologist is on vacation until next week so we don't expect to get the results until next Tuesday.
Have a great Labor day weekend.
Bridget
Monday, August 19, 2002 at 06:52 AM (CDT)
Hello Everyone,
Things are going great for us right now. The kids have each reached milestones in their lives. Nathan is now potty training & doing quite well. Kearsten is learning to swim without floaties.
The weather has been very hot this past week & both of the kids have been playing in Mimi & Grampi's pool a lot. They were also very fortunate to go to the beach on Friday with Uncle Pat & Aunt Terri. They then spent the night & played at Pat & Terri's all day on Saturday.
Our house is moving along now. The framing, roofing & window installation is now complete. We started the electrical work this weekend by putting in all the junction boxes for the switches & outlets. If we aren't happy with the outlet locations, I will have no one to blame but myself.
All in all, things are great at the Pichette household. We hope the same is true for all of you. Enjoy the remainder of your summer.
Love,
Bridget
Thursday, August 15, 2002 at 06:22 AM (CDT)
Hello Everyone,
I just thought that I would let you know that Nathan's scan was delayed. Unfortunately, he won't be getting the MIBG scan until September 18th. His oncologist thought the original date was scheduled too early & changed the appointment. Too bad for Don & Nathan who went to Boston thinking it was still on. Another wasted trip.
First scan is August 28th. Bone scan. We will update you after the scan.
Bridget
Thursday, August 01, 2002 at 11:20 AM (CDT)
Hi Everyone,
Nathan has eluded the doctor's again. All the lab test came back negative so they have no idea what caused his diahrrea for 4 weeks. Don & I were very happy last night when we found a solid nugget in his diaper yesterday. Hopefully the diahrrea is gone for good.
Out with the old & in with the new ailment. Now he has a terrible head cold & cough. We are watching him carefully to ensure that it doesn't become pneumonia or a sinus infection again.
Scans have been scheduled for Aug & Sept. MIBG scan is on August 14th @ 2:30pm (isotope injection on 13th) Bone scan is August 28th @ 2:00pm. CT scan is Sept 9th @ 9:00am. It will be rough getting through the afternoon appointments (no eating allowed), but once we get clear scans on all of them, Nathan will have been cancer free for one full year. Please pray for us that the statement above is true.
Kearsten update: She is doing well, full of energy & anxious to take on the world. She is always busy in her world of make believe, however she would love to go to preschool. Maybe in the fall.
House update: Framing is 70% done, roof on next week, windows & doors in soon so by the end of August the house should look finished on the outside.
Thanks for checking in & thank you for keeping Nathan in your prayers.
Bridget
Monday, July 22, 2002 at 07:50 AM (CDT)
Hello Everyone,
Last week was good all around. The kids had annual check-ups on Wednesday. Kearsten is 3' 5" tall weighing 35 lbs and Nathan is 3' weighing 29 lbs. The kids were great for Dr. Lynch and he answered a ton of my questions. We are trying to diagnois why Nathan has had diahrrea for 3 weeks. He gave me lovely laboratory vials for Nathan's stool samples that Don & I have to collect. Sometimes the rewards of being a parent are disguised by disgusting acts.
On Friday, July 19th, Nathan had his oncology check-up. We are so proud of him, because for the first time ever, he sat perfectly still & quiet for his blood draw. The nurse got his vein the first time & all is well. We are still waiting for the blood work results. Dr Pelidis is concerned about the diarrhea & wants a copy of the laboratory reports on the stools samples.
Our house framing has begun. We are so excited & now we will be able to see what our house will look like. It is a good thing that they are starting, because at the rate that Don & I change our minds, this could take forever.
I have to go to a meeting now so I'll talk to you soon.
Bridget
Monday, July 15, 2002 at 06:42 AM (CDT)
Hello Everyone,
The kids are doing wonderful. We have had many summertime activities to keep us occupied which has been lots of fun. The kids are being spoiled by frequent visits to the park and/or Mimi's pool, but when times are tough we venture out to the yard where they use the "Six Flags" water park that Uncle Bob & Maureen gave to Nathan on his birthday.
Both of the kids have annual wellness checkups this week. I am anxious to see how much they each weigh & how tall they are. I think that they are pretty close in weight even though Kearsten is a lot taller. Nathan also has a clinic visit on Friday for bloodwork.
Congratulations to Roxanne & Mike. They moved into their new home on July 4th. They hosted their first BBQ there on July 5th (never had enough room in their apartment to have the whole family over at once before).
Unfortunately, our new house isn't moving forward too quickly. It seems that our framer has run into some bad luck & ended up in the hospital. Slight delay, but we will prevail. We are still hoping that he'll start this week because we want a move date in mid November.
I was sent this "IRISH FRIENDSHIP WISH" & I wanted to pass it on to all my family & friends that have supported us & continue to follow Nathan's progress. It goes as follows:
May there always be work for your hands to do;
May your purse always hold a coin or two;
May the sun always shine on your windowpane;
May a rainbow be certain to follow each rain;
May the hand of a friend always be near you;
May God fill your heart with gladness to cheer you.
We wish you all the best life has to offer,
Love,
Don, Bridget & the kids
Wednesday, June 12, 2002 at 11:35 AM (CDT)
Hello Everyone,
Well it has definitely been quite awhile since I last updated everyone which I hope everyone knows "No news is good news" for us.
May 29th - our little man turned 2. It was a wonderful day & we are so blessed to have had his second birthday being "cancer free". All the immediate family was over for a BBQ & birthday cake on Saturday, June 1st. Nathan was showered with gifts & finally understands that the pretty wrapped boxes have toys & good stuff in them.
Nathan is also recovering from his sinus infection. We have just finished a three week regimine of giving him antibiotics twice a day. Thank God he likes the taste of Augmentin. Unfortunately though, Nathan has been battling with black flies. Nathan is allergic to their bites which causes the site to swell & ooze. Fortunately, I discovered that Benedryl makes a grape kid's tablet which Nathan really likes (he won't let me near him with the liquid stuff) so that helps with the itches.
Don has been extremely busy this pool season. My new job has been a wonderful change & the company is great to work for.
House update: We now have a foundation & hopefully the framing will start next week.
I hope all is well with all our family & friends. Thanks for checking in.
Bridget
Thursday, May 16, 2002 at 06:02 AM (CDT)
Hello Everyone,
Another sigh of relief as we found out that Nathan has maintained his NED status. His scans were all clear. We are so happy that this monster has not returned in our lives.
We did find out that Nathan still has a sinus infection & fluid behind his ear. This time the doctor is giving us a stronger antibiotic for a longer time interval. Once that is cleared up, Nathan will be so healthy. He is really thriving now & by looking at him you would never know the ordeal he has been through. He is a very resilient kid.
Thanks for checking in,
Love,
Bridget
Tuesday, May 14, 2002 at 08:09 AM (CDT)
Hello Everyone,
Other than a very long ride (3 hrs) into Boston due to rain with an unfed, crying 2 year old, yesterday went very well. I called the CT department three times on my way in since I was so late (8:30am appointment - arrival 10:00am). Nervous that I would get there & then find out they cancelled Nathan's appointment. Thankfully, they were very understanding & were patiently waiting with anesthesia for Nathan & I to arrive. As soon as Nathan saw the nurses, he was stuck to me like glue. Obviously he remembers his last trips. I then gave him some Methazoline (light sedative) to take the edge off & calm him down.
Fortunately we had a game plan developed & everything went well. Nathan was sedated using Versed (gas)which he fought & it took three people to hold him down until the gas took effect. After he was under, then they put in his IV & stomach tube for the CT contrast fluid. While the tube is in, Nathan must be inhibated to help regulate his breathing. Fortunately I was also able to coordinate Nathan's blood draws while he was sedated rather than during his clinic check-up. One less trama to deal with.
They scanned four areas: chest cavity, abdomin area, pelvis area & eye orbitals. Results from the scans will be known in 24-48 hours. I will post as soon as we know something.
Upon coming out of sedation, Nathan was immediately pulling at his IV & blood pressure cuff off while saying "all done, go home" over and over again. He was so good while we were in recovery.
Then we went to his check-up with Dr. Pelidis. Nathan now weighs 29.5 pounds & is 35 inches tall. His blood work-up was within normal ranges. As the doctor was feeling his belly, he started helping too by pushing around with his own hands. It was quite funny. He also had fun with the little light they use for checking your pupils & ears.
In July we will follow-up with another check-up & redo all scans (CT, bone, MRI, MIBG?) in September (his 1 year mark).
Talk to you soon,
Bridget
Monday, April 22, 2002 at 07:17 AM (CDT)
Hi Everyone,
Today is Jason's Birthday. HAPPY BIRTHDAY UNCLE JAY!!! Love Kearsten & Nathan.
Nathan continues to thrive. His urine tests came back fine and were both well within the normal levels for his age group. Nathan's next appointment is May 13th for a CT scan. I strongly stated that we will not put him through the CT scan again without anesthesia being involved from the beginning. (Lessons learned from February's fiascos)
It is hard to believe that Kearsten turned 4 years old on the 16th. Kearsten had a wonderful birthday party last weekend with all our family present. She has been playing with her new toys all week and repeatly stresses how big she is. She now states that she is too old for a car seat and is big enough to go to school. Oh, how they grow so fast.
Take care everyone,
Bridget
Monday, April 08, 2002 at 06:25 AM (CDT)
Good Morning Everyone,
Nathan's appointment on 4/4 went very well. Nurse Cathy was able to get a blood draw on the first attempt. Finally, Nathan gets a break from too much poking. We also had urine tests done, but the results will not be in for about 1 additional week. I post the information when it is available to us.
Both, kids are doing great. Don's pool season has started so he's getting very busy.
Prayers for Nathan are always welcome. I request that everyone say a prayer for a dear 6 yr old friend of ours who has relapsed with a brain tumor. His name is Timmy Begin. Timmy & Nathan became good friends this past year. Nathan is also very fond of Cheryle, Timmy's mom.
Talk to you soon.
Bridget
Friday, March 29, 2002 at 07:47 AM (CST)
Hello Everyone,
Nathan's next appointment for physical & urine testing is on Thursday, April 4th @ 10:30am. We need to ensure that we modify his diet to exclude: chocolate, vanilla, coffee, tea, colas, bananas, OJ. Not too bad except for the fact that Easter is this Sunday & he will want Chocolate. Oh well.
Don & I finally closed on our land yesterday. We now officially own it. It is a wonderful feeling. Now we need to finalize the details of our construction loan & get our building permit. We are scheduled to dig the foundation on April 22nd. Bob has done a lot of work with Don to prep the site already. (clear trees, stump removal & burial, leveling the lot)
I wish everyone a very happy Easter.
Love,
Bridget & family
Monday, March 25, 2002 at 07:17 AM (CST)
Hello Everyone,
I just thought I'd give you a quick update.
NATHAN IS DOING GREAT. Our family is healthy & happy.
Talk to you all soon.
Bridget
Monday, March 18, 2002 at 07:36 AM (CST)
Hello Everyone,
The kids got a touch of the 24 hour flu this weekend. Kearsten had a quick moment of vomitting on Saturday, but ademently reassured her Daddy that she wasn't sick & felt okay. Unfortunately, Nathan's spell lasted a lot longer. He was sick all day Sunday which resulted in me having to do lots of laundry including the bedding for his crib & our bed.
I just got a report from Don & it appears that Nathan is better today. He has had a banana & some milk without any adverse effects. Thank goodness that is over.
Don & I each got a day of play this past weekend. I got to spend Saturday at the New England Flower Show with Susan, Michelle & Mom. It was lovely & really gave me a dose of spring. Don joined those in green on Sunday & went out with his family for corned beef, cabbage & green beer.
I'm not sure when Nathan's next appointment is, but I will let you know the date. Fortunately it will only be a physical check-up with bloodwork & no more scans until May. I think that we will redo the urine test since the last one may have been wrong.
Thanks for checking in,
Bridget
Friday, March 08, 2002 at 10:58 AM (CST)
Hello Everyone,
With good news all around, our life is starting to get back to somewhat normal. Nathan appears to be recovering from all his infections so the kids are doing well. With spring coming we will be going the park a lot more (especially this weekend, expecting 60's).
Don & Bob are working on the lot this weekend. Removing stumps & hopefully levelling the lot out a little. We are very fortunate that the current owner is letting us work on the lot prior to actually owning it (which should be soon).
Happy Birthdays to all March babies:
Michelle on March 1st
Mamie on March 9th
Mrs. Pichette on March 13th
Mike on March 17th
Roxanne on March 26th.
Again we'd like to thank everyone who has helped us along the way, with kind words, prayers, helping hands, or shoulders to lean on. February was a difficult month for us, but we came out ahead with your help and support.
One last request, our friend, Timmy Begin (7 years old) is going in for a MRI on Wednesday (March 13th). We are praying & hoping that his tumor in his brain has not returned. Please pray for him and hope that he too remains cancer free.
With much love,
Bridget
Thursday, February 28, 2002 at 11:25 AM (CST)
Hi Everyone,
Good news, Good news, Good news!!!!!!!!!!
Nathan's CT scan showed that he is maintaining his NED status. I repeat, there are no signs that his NB has returned!!! The CT scan did show that Nathan is experiencing a major sinus infection with an ear infection. That is why he was complaining about his eyes hurting lately. Thankfully, we can easily fix both of those infections. Dr. Pelidis has prescribed an antibiotic for him to get rid of the infections.
One of his urinalysis results came back elevated (VMA 21, up from 12.3 before), but within the acceptable range(5.3-21). With both of his scans (CT & MRI) being clear, it is likely that the result was skewed by food he may have consumed. Chocolate, bananas, cola, etc... can all adversely effect the test by giving false high readings. We will be more alert to what he eats next time the urine test is done.
Don & I are ecstatic & extremely relieved about these results. Since the beginning of February, we have beening worrying a lot about relapse because Nathan started complaining about his eyes. Unfortunately for him, he has been suffering for several weeks now while we waited for the CT to be successfully done.
Thank you God for keeping Nathan NB free. We are truly blessed.
Love always, Don & Bridget
Thursday, February 28, 2002 at 06:38 AM (CST)
Hi Everyone,
I just wanted to let you know that we have finally gotten Nathan's CT scan done. After making Nathan wait until 2:00pm without food or milk, they were able to anesthesize Nathan with gas, then put he IV in. Then they put the nose tube in for the CT contrast fluid. They also had to inhubate him since the nose tube could disrupt his breathing. Scan was completed without any further complications.
Nathan is doing well. I will up date you when we get the results.
Bridget
Thursday February 21, 2002 12:05 AM CST
Hi Everyone,
Next Wednesday (Feb 27) @ 12:00pm, we will try to finally conduct Nathan's CT scan with the help of anesthesia & the nose tube. Hopefully the third times a charm. I also hope that after all the headaches of getting this scan done, that we get good (NED) results. We are also still waiting for the urine analysis. Results should be in by the end of this week.
Thanks for checking in,
Bridget
Thought for the day:
"It is only possible to live happily ever after on a day-to-day basis." by: Margaret Bonnano
Wednesday February 20, 2002 10:49 AM CST
Hi Everyone,
Still no CT scan. Don & Nathan went to clinic to get his bloodwork done and have an IV put in. Obviously this is not an easy task. They were able to get one in just long enough to do his blood draw, but then the line clotted. So no IV, no scan. We are still having problems getting Nathan to drink the oral CT contrast fluid.
We are now going to have to anesthesia sedate him, put in the IV, put a tube in his throat to force the oral contrast in, wait 30 min for constrast to be absorbed, then finally conduct the scan.
We do not have a new date yet for the CT scan so I will keep you posted.
Otherwise, Nathan has a bad cold w/cough and also has conjuctivitis in his left eye. The little guy just can't win. Kearsten also has a mild cold, but her behavior/attitude is normal.
Talk to you soon,
Bridget
Wednesday February 13, 2002 8:17 PM CST
Hello Everyone,
Today has been a long, painful day for Nathan. Unfortunately we were not able to get the CT scan done and here's why. Don & Nathan got to the hospital at 7:30am for the scan. Nathan had to be forced to drink the CT contrast fluid, one mouthful at a time between screaming & crying since he wouldn't cooperate on his own. After that trying ordeal, Nathan is sedated with Nebutol which just puts him to sleep. Then
the nurses tried to put in a IV. They thought it was in, but Don asked them to check it & they reassured Don that it was okay.
Finally, they start the scan & try to start the IV contrast fluid, but it doesn't work.
The IV isn't in a vein. They tried 5 more times in different places to get a vein, but Nathan awoke from sedation & became hostile so there was no way a needle was going in. Don was furious with them. All that trama for nothing.
We have been rescheduled for next Wednesday, however we are going to the pediatric hemotology clinic first where they will do his blood draw & put in the IV. Those nurses love Nathan & will take good care of him.
It is getting harder to bring him to the hospital as Nathan gets older. He understands the routine & knows when it is coming. He gets upset if he doesn't get his milk in the morning, or if Kearsten doesn't get ready with him, or if only Kearsten is the only one dropped off at daycare, and especially for any ride over 30 minutes. We try to distract him, but he knows.
Thanks for checking in. Please keep him in your prayers.
Bridget
Friday February 8, 2002 12:33 AM CST
Hello Everyone,
Nathan's scan went well on Wednesday, 2/6/02. He was a trouper and took the sedation very well. We have received preliminary results of the MRI. Nathan's spinal column looks CLEAR of any signs of NB. One test out of three down and fortunately it is in our favor.
Next Wednesday is the CT scans which looks at his chest, abdomin and eye orbitals. We will also be bringing in a urine sample to monitor the NB markers which show up when his disease is active.
Have a great weekend and thanks for checking in.
Bridget
Tuesday January 29, 2002 8:41 AM CST
Hello Everyone,
Sorry that it has been a while since I have written, but life has been very exciting for us lately and I haven't had time.
For starters, I was laid off on January 10th with an end date of March 31st, but I got a new job offer Jan. 17th so I resigned on Jan 18. Polyclad counteroffered with a very good position (Director of Health & Safety), but I turned it down. I definitely feel that my new position (Senior Project Engineer) at Genetics Institute will provide me with good growth & stability for the future.
Also Don & I have signed an agreement for a piece of land so we can proceed & build a house. We are very excited and ready to have our own place without tenants. We are now in the process of developing a construction budget and applying for a construction loan.
The kids are doing wonderfully. I HAVE POSTED NEW PICTURES SO PLEASE CHECK THEM OUT.
Nathan's first scan, MRI, is next Wednesday so please say a quick prayer for him for clear scans. I will update the website as soon as I have new information.
Love,
Bridget
Thoughts of the Day (here's a few to make you laugh or think):
1) If opportunity doesn't knock, build a door.
2) The best bridge between despair and hope is a good night's sleep.
3) Slander is like a hornet; if you cannot kill it dead at the first blow, better not to strike at it.
4) One of the secrets of life is to make stepping stones out of stumbling blocks.
Friday January 18, 2002 8:21 AM CST
Hello Everyone,
Nathan continues to thrive. His vocabulary is expanding & so is his personality. One thing always remains consistent with this little man, his wonderful smile which he freely & frequently gives. Nathan had a monthly check-up on Wednesday. Nathan is now a corpulant (Ha, Ha) 27 lbs and 33 inches tall which puts him in the 75% range for his age group. Not bad for a kid who has had chemo.
Next scan dates are now available. MRI will be on Feb 6th @ 9:30am and CT scans will be on Feb 13th @ 7:40am. At least the appointments are early so Nathan doesn't have to go all day without food.
Please say a few prayers for us as February will be a very emotional benchmark for our family. Nathan's follow-up MRI appointment is the same day as his very first MRI & his emergency surgery year ago. We are praying that Nathan's 6 month follow-up scans will show a continued NED (no evidence of disease) status.
Good health to you all.
Love always,
Bridget
Wednesday, January 09, 2002 at 12:54 PM (CST)
Hello Everyone,
I hope that the holidays were wonderful to all our family & friends. They were for us. Christmas was hectic, but wonderful & the children were absolutely spoiled. It took me days to recover from the tornado(kids & toys)that went through our house. I was fortunate enough to have some vacation time left to have Dec 21 thru Jan 2 off from work.
We spent a nice quiet & relaxing New Year's Eve with Roxanne & Mike at our house. We had a wonderful dinner & played cribbage while the kids stayed up late playing & watching movies.
We have been fortunate enough to go ice skating twice with the kids. The first time Nathan fell & hit his head so it wasn't fun any more to him. However, the second time we went we attached sandpaper to his boots so he wouldn't slip. He had a blast walking around with the hockey stick. Kearsten on the other hand really enjoyed being pulled around the ice on her sled. It was the first time we could use the sled since there hasn't been any snow here.
Thankfully the snow finally came on Jan 6,7th so we played outside for several hours with the kids that night while we shoveled. Kearsten likes to sneak up and throw snowballs at you while Nathan likes to eat the snow.
Nathan has his monthly doctors appointment next Wednesday(Jan 16th). We should also be getting our next scan schedule. Nathan is due for his quarterly scans in February so please continue to keep him your prayers.
Wednesday, January 02, 2002 at 09:58 AM (CST)
I went to Barnes & Noble today & I happened to read a story from Chicken Soup for the Surviving Soul. Here’s the condensed version: It was about a woman going into clinic for chemo, and for her it was a terrible place, crowded, noisy, uncomfortable, and a place where nobody laughed or smiled. She called it "hell". As she was looking around she saw nothing but tiredness and fear on the faces of the children and parents, she suddenly heard a strange sound, it was a laugh. She looked around, and there was an eight month old baby and mother playing about, baby laughing, mother smiling. It was obvious from the baby's baldness that he too had been chosen to suffer an unfair and uncertain fate. As they walked past her, she looked at the baby again. He was completely calm, his eyes bright and there was an expression of complete trust. Anyway, the story continues to say that the baby changed this woman's life. He taught her that anger, tears and sadness are only for those who have given up. He also taught her to trust.
As I read this story, and could only picture Nathan as that little baby, always laughing, always trusting. Never letting a minute go by wondering why, but only knowing that things will get better. Having a parent, love everything about him, smiling and laughing right along with him. Always searching (not always hard to find) for the small joys in every situation. We can make the most awful situations better and yes, most times, even fun. Sounds strange, but even as horrible as this disease can be & was, it has enriched our lives forever. We have learnt things in the last ten months some people are never fortunate to learn. For this I will always be thankful.
As I sat there with the book, I realized just how much we have to be thankful for this holiday season. Our life has been a roller coaster with many ups & downs since February, however through it all Nathan has been our inspiration & our hero. Our little boy has been through so much, yet he is unphased by it and continues to be a smiling, happy toddler. He is just an amazing little boy who has touched so many lives. With every challenge that life has to offer, you really have to look for the positive outcomes in order to help you deal with it. Here are some of the things that I am thankful for:
1) Don and all of his love and support for me & the kids.
2) Kearsten for her ability to only see Nathan as her baby brother.
3) Family and friends. Without you, the journey would have been much more difficult.
4) Our new friends & their children that we have made through the clinic.
5) Doctors, nurses and all from the medical profession. They are not only knowledgeable but also caring. Special thank you for Nathan’s team of nurses who not only took care of him, but played with him & made him feel special.
6) Prayers from everyone.
7) Last, but not least, the fact that Nathan is a “cancer survivor”.
A holiday toast: Wishing for wonderful year in 2002 for all our family & friends.
Thank you again for supporting us & continuing to check in on Nathan's progress. Please leave a message for Nathan or us anytime. We enjoy the notes.
Wednesday, December 19, 2001 at 08:54 AM (CST)
Hi Everyone,
The Pichette's have just returned from our first family vacation (Juniper, FL). We went with friends, John, Julie, Jack, Ben (Salizzoni family) and Rich Gustafson & Pam. It was absolutely wonderful. The kids had a great time. We went to Lion Safari (zoo with animals out in the open as they would be naturally (no cages)) on Friday, the beach on Saturday, beach & pool on Sunday then golf cart rides & pool on Monday. The kids loved the beach. Kearsten collected a ton of shells & Nathan covered himself from head to toe in sand. Neither one really wanted to go in the water, but that is okay because the second day we couldn't go in due to Man-o-war jellyfish in the area. (They look like blue cellophane with a red vein holding it together.)
Kearsten's favorite part of the trip was all the beautiful fountains in Florida & Nathan loved seeing the ducks on the water near our house. Oh, the innocence of children is great!
The adults got to enjoy a wonderful dinner out on Saturday night. It was so nice to relax & not worry about work or the hospital/clinic visits. We are now truly ready for the Christmas season.
I will post new pictures soon.
Love,
Bridget
Monday, December 10, 2001 at 09:00 AM (CST)
Hello Everyone,
Nathan's broviac is gone. He is tube free & enjoying life without daily maintenance and restrictions due to his line. Since we were on standby for his removal, we waited an extra two hours to get in. Try telling a 18 month old that he can't have any milk at 1:30pm after not having anything since midnight. Not good! However, he handled the wait okay & got his tube removed. It was only a 1 hr procedure and we got to go home that evening.
Memere came to babysit that evening while Don & I got to go to a Christmas party & celebrate. It was a very emotional day for us. We seem to have finally closed a chapter in our lives. We are anxiously waiting for the new year & all the joys it will bring.
On Sunday, Don got a 14 point buck on the last day of hunting season. Needless to say he was ecstatic & on cloud 9. It seems as though our luck is changing.
It also snowed on Sunday & it was great to watch the kids play. Nathan loved it & kept throwing himself down so he could eat it while Kearsten was making snow angels. Sunday was a wonderful day for all.
We are headed to Florida on Thursday for a mini vacation with the kids. We will tell you all about it next week.
Take care.
Tuesday, December 04, 2001 at 09:11 AM (CST)
Hello Everyone,
We had a wonderful weekend with our annual Christmas party on Sunday. We even had a guest appearance from Santa Claus, but Kearsten & Nathan wanted nothing to do with him.
Yesterday, Don & Nathan went in for his surgical consult for Friday's removal of his broviac. At noon on Friday, Nathan will have the last reminder of this year's ordeal removed. Fortunately, the removal is quick, painless & treated as outpatient surgery. Nathan will finally be able to take baths/showers, run around naked or go swimming without having to cover up his tube. The removal also means that we don't have to worry everytime he gets a low grade fever. We are so excited for Friday. We are anxious to see if Nathan notices that the tube is missing.
Thank you for checking in with , praying for & supporting us. We appreciate all the support & love we have been given in this difficult year.
Take care & God bless!
Bridget
Thought for the day:
"Happiness isn't about what happens to us -- it's about how we perceive what happens to us. It's the knack of finding a positive for every negative, and viewing a setback as a challenge. If we can just stop wishing for what we don't have, and start enjoying what we do have, our lives can be richer, more fulfilled -- and happier. The time to be happy is now."
Sounds so easy doesn't it?
Monday, November 26, 2001 at 11:35 AM (CST)
Hello Everyone,
Happy "belated" Thanksgiving!!
We have so much to be thankful for this week. Nathan had his MRI on Wednesday. Everything went very smoothly, he went into his appointment early, anesthesia was on time, they used Propafal which has a quick recovery time & we left Boston by 1:00pm to beat the holiday traffic.
On Friday morning, Nathan's doctor called to tell us that his MRI is clear. Nathan is maintaining his NED status. We couldn't be happier. We are hoping to have his broviac removed next week. Let's keep our fingers crossed because that is what Don & I want for Christmas.
Thanks for caring & checking in on Nathan. It means a lot to us.
Bye.
Monday, November 19, 2001 at 08:10 AM (CST)
Hi folks,
Unfortunately, Nathan had to spend the weekend in the hospital due to a fever. We went to the emergency room Friday night & were admitted to the hospital that night (we got to our floor at 1:00am). The admission was precautionary due to Nathan's broviac. We need to be very careful of a infection in his line since it would directly infect his blood. Nathan did have several fever spikes on Saturday, but fortunately nothing on Sunday so we got to leave that night. We got home at about 8:30pm.
This morning I found out why Nathan was having fevers. He had the telltale sign of Rosiola rash on his trunk, neck & side of his face. With rosiola, you have fevers for 3-4 days, then the rash follows 24 hours after the fever is gone. Fortunately, the rash is not bothersome or itchy and it should go away in 24-48 hours.
Just in time for his MRI on Wednesday. The MRI will take a close look at his spine & ensure that the NB is not growing there.
Don & Kearsten had a good weekend visiting everyone on Saturday and then spent the day cleaning the house on Sunday. I was very relieved to walk into a clean house on Sunday night. My husband is wonderful.
I will post Nathan's MRI results as soon as I get them.
Take care everyone.
Friday, November 16, 2001 at 01:56 PM (CST)
Hello everyone,
WHEW!!!! After holding our breath for 2 days now, we got word from Dr. Pelidis that Nathan's 3 month follow-up scans are good. No problem areas at all in the pelvis, chest, abdomin & head. We are so happy.
Next week is his MRI & the results from his urine analysis. Stay tuned because we are going to give everyone one a reason to be happy & thankful this holiday season.
Thursday, November 01, 2001 at 07:57 AM (CST)
Hi Everyone,
Today is a wonderful day. Nathan is doing great and has started talking quite a bit. It is like someone turned a switch on in his head.
I have to confess that I have been stressed for two weeks now, because Nathan's eye was slightly black-n-blue. I was afraid of the possibilities. When Don & I discussed it, he had noticed also. Don brought him to Boston to be looked at yesterday. Our oncologist was very supportive & ordered a head CT. Fortunately, it showed nothing unusual except a little fluid behind the ear. So he may be getting an ear infection & we have a prescription for it already. I can deal with that. We were told to watch the eye & if we were still concerned in November when his scans are due, she will add another head CT to his list of scans.
We are so relieved. I guess we will always worry about Nathan, but is nice to know that our doctor is responsive to our concerns.
I would like everyone to pray for two boys that I know that are struggling with neuroblastoma: Steven Hui & Tyler Moore. Thank you everyone for your continued support, prayers & love.
Bridget
Thought for the day:
"Yesterday's the past, tomorrow's the future, but today is a GIFT. That's why it's called the present."
Monday, October 29, 2001 at 06:20 PM (CST)
Hello Everyone,
We had a wonderful weekend. It was very busy, but very enjoyable. Friday night, we visited Grampi & Mimi with Jen & Megan. On Saturday, the kids & I played in the morning, then Kara & her 2 kids (Alexander & Lauren) came over for a few hours before the Gingras's Halloween Party. At the Gingras's party, the kids played many games & had lots of food. Kearsten & Brookelyn were beautiful butterflies while Jason & Nathan were the cutest little critters, bumblebee & lion, respectively.
On Sunday, Manchester had trick or treating, thankfully the time change worked in our favor since both kids took early naps. We went to seven houses (family only) & the kids made out like bandits. They got toys & tons of candy. After trick or treating, we went to Uncle Jay's to play in the leaves. He made a huge pile for the kids to play in. They threw Megan in the pile & she disappeared. When they pulled her out, she was eating leaves. Very funny.
Megan turned 1 this weekend so we had her party on Sunday night. Yet another fun event for all the kids.
The guys (Don & Jay with 4 friends) went to Pittsburg for wild game weekend. They always attempt to hunt rabbit & partridge with some success, but they always find a good evening buzz & great commardory. This year had a special twist. Jay & Rich managed to hit a moose with our truck. Little damage to the truck, but the moose with broken legs had to be put down. All in all the guys had a good weekend & returned in time for Megan's birthday party.
I have updated the pictures so please take a look. Thanks for checking in our family. We are blessed with wonderful friends and family.
Wednesday, October 24, 2001 at 10:38 AM (CDT)
Hello Everyone,
So far, so good. Nathan had his doctor's appointment in Boston yesterday. The appointment consisted of a physical & blood work. Everything looked fine. He weighs 25 pounds & is 31 inches long. His bloodwork came back normal for all types (red, white & platelets) which means that his body isn't fighting something they can't see. Now we wait for November to get a look inside his body.
Kearsten is also doing well. Fortunately, she has returned to her lovable self after a few weeks of possession from the hateful, whiny monster.
I will be posting new pictures of the kids after Halloween so stay tuned.
Monday, October 15, 2001 at 06:40 AM (CDT)
Hello everyone,
The Pichette's are feeling well and doing great. The kids got to enjoy an evening at Pat & Terri's resort this Saturday. They had a wonderful time while Don & I got to go out for an elegant dinner.
Today is our 7th year anniverary. Don't worry there is no 7 yr itch for us because we have been together for 14 years. Not only that, our marriage is better and even stronger after events of this past year.
I found this poem the other day. It was originally written about 1 girl, however I modified it for my two. Not a day goes by that I don't thank God for Kearsten & Nathan.
Thank You God for my Children
Story time is over you nod your tired head
I rearrange the covers and tuck you down in bed
A kiss upon the forehead, prayers and "nighty night"
Moonlight bathes your face, oh what a lovely sight
The time we shared today,
The hassle and the fun
The questions and the laughter
In my mind now run
I marvel at your beauty
And wonder all the while
How at times you make me angry
And then just make me smile
Sweet and Lovely Angels
Dearest in the world
Thank you God for my blessings,
My precious Little Children
Wednesday, October 10, 2001 at 08:13 AM (CDT)
Hello everyone,
Where, oh where did the time go? It has been over a week and half since my last entry.
We did go to Deerfield fair. The kids had a great time especially with the animals in the petting area. Kearsten particularly liked the baby pigs in the "3 Little Pigs" display. Nathan loved it all. We ate lots of goodies (fried dough, jumbo doughnut, cotton candy, sausage & peppers), afterall that is what the fair is about. We finished the day with a ferris wheel ride which the kids loved.
This past week for the Pichette's especially for Don has been difficult. I went to California on a business trip. Normally not a bad situation, however everyone except Nathan got sick. Kearsten developed a very bad cough & slight fever, similar to the croup. I developed a sinus infection which wasn't discovered or medicated until yesterday. (I had never had one before however I knew that the feeling that my face was going to fall off every time I bent over wasn't normal.) We are all starting to get a little bit better now. I am hoping that everyone is recovered for the weekend.
FYI here's Nathan's upcoming schedule for October & November.
October 23 - clinic visit for blood work & physical exam
November 14 - CT scan
November 21 - MRI scan
Nathan is doing great and has maintained his fiery spirit. Last week he was the biggest instigator of trouble since he wanted Kearsten to play with him, but she was sick. We are hoping that Nathan doesn't get sick, but I think that his weekly antibiotic (Bactrim) is keeping him well.
Take care & God bless.
Bridget
Saturday, September 29, 2001 at 11:11 AM (CDT)
Hello everyone,
It has been a very busy week for us. Our appointments for the MIBG scan were cancelled then rescheduled for a week later then changed again. Thankfully all of Nathan's scans were done and the results show no new growth. Apparently, Nathan is maintaining his NED status.
Wednesday & Thursday were difficult days for Nathan & Don. Don took Nathan in for his CATscan on Wednesday. He met with Dr. Pelidis at 10:00am for his physical & blood work then had to wait around for the scan which was at 2:00pm. Waiting is not fun when your child is hungrey & tired, however they made the best of it & enjoyed the playroom. Finally 2:00pm arrives, Nathan was sedated with Nembutol(sp?), he required the maximum dose he could get because he was fighting sleep. Catscan was completed. Don takes Nathan to get his MIBG injection. Nathan is mad & pitches a fit. Finally they leave, Nathan cried for half the ride home & finally sleeps. Nathan slept from 5:30pm until 7:00am Thursday. The ordeal wore him out.
On Thursday, I get him up & dressed for his day since he is going to Boston for his MIBG scan. The nurses had put a sticker on his forehead the day before, so I took it off. I was shocked to see that the sticker took all of his hair with it. He had a bald patch on his forehead now. The poor fella finally grows some hair & we rip it off with a sticker. Nathan was also having lots of difficulty walking due to the residual effects of sedation. It took about an hour for him to get rid of his sea legs.
Nathan & Don went to see Grampi at his jobsite on the way to Boston. Grampi was happy to get the unexpected visit. Now on to Boston for the MIBG scan. Nathan is sedated again & they do the scan. Nathan & Don return home, however our little fella wasn't feeling very well & threw-up on Daddy twice.
Fortunately the scans are over until November. The CAT & MIBG scand will be used as a baseline for all future scans.
Well we are off to Deerfield Fair so I will post again later.
Good bye & Have a great weekend.
Friday, September 21, 2001 at 01:59 PM (CDT)
Hello everyone,
I know it has been awhile since the last update, but remember for us "No news is good news". Nathan has had a pretty severe diaper rash for the past week & finally I brought him to his primary care physician, Dr Lynch. The reason it wasn't going away was that it was a yeast infection. With only 3 applications of the prescription, he's almost back to normal.
Life has returned to some state of normalicy for us. The kids seem to be doing very well at their new daycare. Don has started picking up pool work & helping out Dad @ Ultra Construction. This weekend we are headed to Colebrook for two family functions and some relaxation.
Thanks for checking in. My next update will be around Sept 29th after Nathan's appointments on Sept 26th thru 28th.
Friday, September 14, 2001 at 01:31 PM (CDT)
Hello everyone,
It looks like we keep on getting luckier & luckier as a family. I found out last night that my cousin, Shawn, was in the World Trade Center complex (Building 7) when the planes struck. We are very happy and thankful to know that he is safe.
It has been decided by Nathan's oncologist to do a baseline MIBG scan. Information on the MIBG is: it is one of the most accurate scans used for detection of neuroblastoma is called 131 I-meta-iodobenzylguanidine, or MIBG. It is a specialized scan which is performed in nuclear medicine. The child is injected with a radioactive material and then 48 hours later will have the scan. The MIBG accumulates in neuroblastoma cells, which then appear on the scan as a "hot spot." Nathan will be injected with the radioactive dye on Sept 26th and he will have the scan done on Sept 28th.
Additional requirements: The day prior to receiving the injection, and for a period of three to five days following injection, the child should take an oral medication, called potassium iodide, to protect the thyroid gland. Also Nathan will have to be sedated for the scan.
The good thing about the scan is that we can confirm that Nathan is NED (no evidence of disease). Term is used instead of remission due to the fact that a child must be NED for 5 years before a child is declared to be in remission. Please join us in praying for "No Hot Spots".
Thank you & have a nice weekend.
Wednesday, September 12, 2001 at 12:25 PM (CDT)
Hello family & friends,
Nathan continues to thrive. He has recovered from surgery quite well with only a few reminders such as a limp, body distortion & of course, his scars. We are hoping that as his muscles strengthen and return to their normal location in the body, he will start to straighten out & his limp will leave. Nathan still has his broviac which we flush twice a day & change the bandage on 3 times a week, however this is just a part of routine life for us. Hopefully after three months of follow-up appointments, we will be able to get it removed. (Removal consists of outpatient surgery)
We have rescheduled Nathan's follow-up appointment with his oncologist. He will meet with the oncologist and get his CAT scan on September 26th. The CAT scan will be his "cancer free" baseline for future comparisions.
Don & I are doing well and are trying to adjust to normal everyday life. We both suffer serious bouts of fear for Nathan and his risk of relapse. We are putting our faith in GOD & our doctors to care & do the right things for him.
After the tragic events that have unfolded in New York City, we ask the everyone say a prayer for the all people affected (families who lost loved ones, public service workers, survivors who lost many friends & their offices, etc...).
Thanks for checking in & praying for us.
Friday, September 07, 2001 at 08:16 AM (CDT)
Hello everyone,
It's now offical. MY KIDS ARE SPOILED ROTTEN! Over the Labor Day weekend, Don's immediate family presented us with a gift. Don & I received a weekend away at the Christmas Tree Farm in Jefferson NH while the kids got a new motorized jeep. Don's family really surprised us & the gifts were greatly appreciated.
The kids love the new jeep. Kearsten still has a hard time steering it so I guess we need to exercise her little arm muscles more. Nathan just rides as a concerned passenger. Maybe he needs to wear his bike helmet when Kearsten is driving.
The kids started at their new daycare this week. So far, so good!
I have updated the photo page. Pictures include: kids in new jeep, scotchy (our cat) & a photo of Nathan's surgical incision. The scar is 7-8 inches long & the dot below it is from his chest tube.
Well this weekend we are going to a fund raising event for the Floating Children's Hospital on Saturday. Rich, Don & Uncle Mike are riding 50 miles for the event & Roxanne & I are volunteering. It should be fun.
Take care & be happy!
Friday, August 31, 2001 at 08:23 AM (CDT)
Hello everyone,
Our life seems to be returning to normal. Nathan is feeling & looking great. He had a follow-up appointment yesterday with Dr. Lessin. His surgical site is healing well and the chest tube drain hole is closed up now. We also had a chest X-ray done which showed that Nathan's lung is almost back to normal with only a slight area that's not fully inflating. However, Dr. Lessin was very happy with the X-ray & said that Nathan's recovery was quite impressive.
We also received to two overhead projector slides showing Nathan's tumor. Fortunately there was a ruler next to it so we now know that the tumor removed was 2.5" long x 1" wide x 0.5" thick. We also know that the tumor that was removed was 1/10th of its original size. Amazing, that it shrunk that much in 6 months! It is mind blowing to think of how big the original tumor was in Nathan's little body.
We also know that Nathan is back to his normal self, because he & Kearsten are fighting again. On Monday morning, Kearsten was resting on a pillow watching cartoons in the living room. Nathan decided that he wanted the pillow & when Kearsten didn't give it to him, he proceeded to bite her & pull her hair. Needless to say, he got scolded but thankfully the worst we have to worry about is sibling rivalries.
We are now trying to get Nathan off of lactofree formula and on to milk. He should have been by now, but the chemo made him stop eating & the formula was his only real source of nutrition. The transition seems to be going well.
Nathan has the following appointments in September: oncologist follow-up on Sept. 21st & surgical follow-up Sept 27th. Sometime around then we will get a baseline tumor-free CAT scan, to be used for future comparisions. The CAT scan is delayed for 4-6 weeks post surgery, to allow the body to heal & get repositioned since the surgery is quite tramatic to the muscles.
Well I have to go back to work. We will keep you all posted & keep us in your prayers for a long & complete remission.
Check back in after Monday & I will post new pictures of the kids.
Thank you.
Bridget
Sunday, August 26, 2001 at 07:04 AM (CDT)
Hello Everyone,
Day 5, Saturday
WE ARE HOME!!! NATHAN HAS BEEN DISCHARGED!!!
NATHAN IS CANCER FREE!!!!
On Friday, Dr Lessin had seen Nathan's X-ray for the pneumothorax (air bubble in his chest) then said that we probably wouldn't leave until Monday maybe Tuesday. Well, that wasn't good enough for Nathan.
After another fitful evening of getting on 3 hours of sleep, Nathan's appetite increased and he had Rice Krispies, orange jello & formula for breakfast. Nathan walked around for awhile visiting his favorite nurses. Nathan is only getting tylenol for pain control which is great. Finally he was ready for a nap @ 9:00am. He slept for 2 hours.
At 11:00am, it was time for his X-ray. His chest x-ray showed that Nathan's body had absorbed almost the entire air bubble. Only a small one remained & his lung looked fine. Dr. Lessin confirmed at 12:00pm that if he maintained his oxygen levels without being on oxygen that we could go home tonight.
We tried to reach the family members that were coming for a visit, but were unsuccessful. Memere, Mimi, Grampi, Bob, Maureen, Jay, Jen, Roxanne & Megan all showed up around 2:00pm. Boy were they suprised when we said, "Thanks for the visit, but we are going home." We showed the family around the hospital & the playroom upstairs.
At 4:00pm we got the news that Nathan's blood oxygen levels were 98% which is good enough to go home on. We left so fast we didn't even change Nathan out of his hospital johnny.
We have to return on Thursday for a follow-up appointment with the surgeon so the bandage can be removed. We will also be getting a follow-up schedule for Nathan from the oncologist. I will post that when I get it.
We got home & had a few family members come over for a visit. Unfortunately, Kearsten had special plans for Saturday night so we will go get her today. We really missed her.
We are truly blessed by this amazing little boy. We are also blessed by our wonderful family & support network. You have helped us so much. Thank you.
Friday, August 24, 2001 at 08:51 PM (CDT)
Day 4
Good news today: Nathan's bone marrow came back negative. Not even any suspicious cells. Thank you God!
Well last night Nathan did not sleep all night except from 2-4am which was very unfortunate for Don since it was on his shift. However he did eat some lime jello which is a step in the right direction.
In the morning Nathan starts his day off very well. He got the okay to finally have some formula. After about 8 ounces, he was quite happy until he got his tylenol with codiene. Unfortunately, his medicine has the wonderful side effect of nausea. So at 9:45am Nathan threw up all over me (Bridget). We decided that we gave him too much formula too fast. We quickly learned our lesson.
At 10:00 we go downstairs for a chest X-ray to see how Nathan's lung is doing. The lung is still not inflating fully due to the air pocket, however the pocket is getting smaller. Nathan is continuing on oxygen to help his lung.
Nathan is regaining his strength and spent most of the afternoon riding around in his cart with his oxygen canister. He also walked for a short time. He is still very unsteady on his feet.
Around 6:25pm he was ready for pain medicine. Again he got tylenol with codiene however he may have inhaled a little bit of it or a piece of banana. He spent the next hour coughing which was quite painful for him. Little guy was exhausted after the coughing episode.
It's 10:05 now & he is resting comfortably. Hopefully he'll sleep through the night.
Talk to you tomorrow.
Don & Bridget
Thursday, August 23, 2001 at 05:46 PM (CDT)
Day 3
Last night Nathan's respitory rate & heart rate were elevated so they increased his IV solutions. Thinking that the extra fluids would help.
8:00am Nathan was napping from this morphine & tylenol. His temperature was still slightly elevated.
10:00am Surgical team comes for a visit & decide to remove his chest tube, cathetor & oxygen line to his nose. It is so nice to see Nathan without all the tubes.
12:00am We get a chest X-ray to see how his chest is holding up without the chest tube and then we motor to the 7th floor. No more ICU. Unfortunately, the X-ray shows that Nathan's left lung is not fully inflating so he needs to be put back on oxygen.
Nathan had an uneventful afternoon & we are waiting for another chest X-ray tonight to re-evaluate his situation.
Some preliminary news: lymph node that was removed was cancer free, his nerve endings look good, and the tumor was showing signs of differentiation (maturity, a very good sign) We are still waiting for the bone marrow and the official report.
We seem to be nearing the end because if we get more good news, Nathan will not need any additional chemo or radiation. We'll keep you posted.
Keep praying, we are almost there.
Love,
Don & Bridget
Wednesday, August 22, 2001 at 05:54 PM (CDT)
Day 2
Well last night Nathan was sedated using Propafal with Fentanyl (stronger than Morphine)for pain control. Every 1.5 hours he would wake up thrashing around trying to pull out his ventilation tube. By 7:00am he had gone from a 20 mcg dose to 95 mcg. It was then decided to remove the ventilation tubing to help pacify him. At that time, the Propafal & Fentanyl were stopped. It was expected that the Fentanyl would last until 2-4pm.
During surgical rounds @ 10:00am, Dr Lessin thought that Nathan may have been uncomfortable and immediately ordered morphine to be given every 2-3hours. That really knocked him out & he slept most of the morning.
At 4:00pm, he woke up and I was finally able to hold Nathan. It was wonderful to hold him and talk to him in my arms even though he fell back to sleep. Nathan is running a low grade fever, however it is expected after surgery & they aren't too concerned for now. Nathan is still retaining a lot of fluid from surgery, but that should go away by tomorrow.
It looks like he may have the chest tube removed tomorrow if all goes well and we may be moved out of PICU and up to the 7th floor. He has been visited by several of his favorite nurses from the 7th floor. His nurses are anxious for him to come up onto their turf.
Thanks for checking in and we'll keep you posted tomorrow.
Love,
Don & Bridget
Tuesday, August 21, 2001 at 06:26 PM (CDT)
Hi Everyone,
Here's the news that everyone has been waiting for. (Abbreviated version first)
IT'S ALL OUT. THE TUMOR HAS BEEN COMPLETELY REMOVED!
Today's story:
Arrived early to the hospital (7:15 am) so we could be sure we missed the traffic. We visited with Nathan's 7th floor nurses and took a few pictures, then off to ambulatory care to check in for surgery. We checked in and then found out that he was scheduled to enter surgery at 10:00. Finally at 9:50am, they come to get us to prep for surgery which only consists of sedating Nathan. We left his side at 11:00am knowing that they had to do the bone marrow aspiration first then the surgery.
At 12:00pm we get our first call from the OR nurse, Jane. She told us that Nathan had just finished the bone marrow aspiration and the surgery had begun. Next call to come at 2:00pm. We (Don, Mom & I) went for a walk to clear our heads and for a little distraction.
At 2:00pm, all is well and surgery still continuing yet expect surgery to end at approximately 4:00pm.
At 4:00pm, surgery is over and they are just closing him up.
At 5:30pm, finally we meet with Dr. Lessin and find out what had happened. The got the entire tumor out with help from Dr. Heilman (neurosurgeon) since the tumor was reaching to the spine. The diaphragm was cut to fully remove the tumor, but that is a small price to pay for the end result. Nathan did not need a blood transfusion.
At 6:30pm, we finally get to see our little boy in the pediatric intensive care unit (PICU). Nathan is heavily sedated since he is on ventilation. There are alot of tubes ( 3 IVs, cathetor, chest drainage tube, ventilation tube, stomach suction tube). It was quite the sight, but strangely there is a sense of peace for us. The tumor is gone and now Nathan is healing.
It is time for us to say "Thank you" for all the prayers, love and support that we have received. Don & I couldn't have made it through this without our family & friends. Several people must be mentioned, but here's a few who stand out.
Mom Pichette - for all the babysitting, household cleaning, laundry & support.
Mom & Dad Lambert - for everything including watching Kearsten when we are away.
Terri (Don's sister) - for the may times she has taken Kearsten over the weekends.
There are many more of you out there and we appreciate everything. Thank you for praying. God has listened to all our prayers and delivered the best scenario we could have hoped for.
This will be a long week of healing for Nathan and I will update the website every night. Hopefully, by Friday we will have some more good news when the tumor pathology and bone marrow information comes in.
We love you all.
Thank you & Good night.
Don & Bridget
Monday, August 20, 2001 at 02:31 AM (CDT)
Good Morning Everyone,
Well it's 3:30am and I can't sleep so I thought I'd give you a quick update about our weekend.
We had the much needed relaxing weekend that we wanted. On Friday night, Whitney came over & watched the kids so Don & I could go out for dinner. It was nice to have some alone time.
On Saturday after much debate, we went to John & Julie's party. We had a great time and it was wonderful to see all of our friends especially since we don't get out as much as we used to. There was about 30 adults and at least the same number of children. Boy, the water in NH sure is fertile.
Funny thing happened this morning. We put Nathan down for his morning nap and Kearsten & I were going shopping to get some shoes & undies. As we were talking outside & getting into the truck, I hear "mom, mom". I look up & there's the little stinker jumping in his crib. He had managed to move the curtain and pull the shade open so he could see outside. It was so funny and that was the end of his nap. Obviously, he wasn't tired so we went shopping as a family instead.
Tomorrow (this morning) is Nathan's EKG in Boston, then we will be back to pack everyone up for the week or so. Kearsten will be staying at Mimi & Grampi's house during the week and at Terri's on the weekend.
I will post again tonight if any new information is discover when we meet with his oncologist today.
Thursday, August 16, 2001 at 07:27 AM (CDT)
Hi everyone,
Nathan's CAT scan went smoothly on Wednesday. Nathan is so funny after being on Nembutal (sedative). He looks like a little drunk man. He can only take two steps and then he falls down. When he woke up from his nap, Don was watching him from a distance and Don said that Nathan kept standing up in his crib and then would throw himself backwards onto the mattress. He kept doing this (without crying) until he noticed Don.
Don spoke with Dr. Lesson and got some preliminary results. It appears that the tumor has continued to reduce in size, shape is long & skinny. However, the tumor didn't shrink upwards so it is not above the diaphragm so the surgery isn't simplified. Dr. Lesson had Dr. Heilman (neurosurgeon) review the CAT scan also and it appears as though there is not involvement of the spinal column. (Thank God). Obviously, the doctor also stated that they won't know for sure where it is until the operation.
Surgery is a GO for Tuesday!!!!
On Monday, we will go into Boston to get Nathan's blood typed and crossed. (They need to verify that his blood hasn't developed any antibodies from previous transfusions and chemo.) They will store blood for him in the blood bank in case it is needed for the surgery. We are also going to have an EKG done. Duxorubicin (1 of 4 chemo drugs Nathan received) has the unpleasant side effect of heart damage so they want to see if Nathan's has changed since his baseline. This is important for the anesthesiologist to know prior to surgery.
Kearsten went to Water Country yesterday with the Gingras clan. She was very tired, but she had had a blast.
We are shooting for a relaxing weekend to prepare for the upcoming week. Thanks to everyone for your continued support.
Don & Bridge
Tuesday, August 14, 2001 at 03:45 PM (CDT)
Hello everyone,
Thankfully today was uneventful. Nathan and Don went to Boston for his MRI at 10:30am. The staff was on-time & cordial. Nathan fought the sedation, but once he received an additional dose of nebutol, off to sleep he went & the MRI was done. Nathan & Don were home by 2:00pm.
We do not have any results of MRI. We are hoping for a meeting with our oncologist this week to discuss the MRI & CAT scans as well as what if scenarios.
CAT scan is tomorrow at 10:30am. The bone marrow aspiration will be delayed so it can be done during surgery since operating room is more aseptic (sterile) environment. The bone marrow results will not change the requirement for surgery so it is okay to wait.
Stay tuned since daily developments will be posted up til the surgery. Thanks for checking in.
Love,
Bridget
Monday, August 13, 2001 at 07:45 PM (CDT)
Hello Everyone.
First with the easy news. Kearsten is back to her normal self. The mistery rash is gone and her independent attitude is back.
Today was a big day. It unfortunately got off to a bad start. We arrived at 8:30am for the bone scan only to find out that they had forgotten to arrange for someone to come & sedate him. "Can't we just wrap him in a blanket & he'll sit still", one guy said. Obviously he doesn't have kids or he would have known that there was no way you were going to wrap a 14 month old in a blanket and get him to stay still for 45 minutes of scans. Finally after some pushing and me being adamant that he be sedated, we got the appointment arranged for 1:00pm with anestegiology. Great but this same guy tells me to make sure that Nathan doesn't eat or drink anything until then. Remember that he hasn't had anything since 6:00am, we finally got them to agree to some juice as long as it is given before 10:00am. Once everything was straightened out, his bone scan went very well. It doesn't change the fact that the nuclear medicine department has the personality of dead fish. No one in the department is friendly except for the receptionist. She must have been imported to the department since she didn't belong there. Oh well, thank God that the rest of the hospital is great. Preliminary reports seem to indicate that his bones are all clear, however we need to get the information from the oncologist to be certain.
Now for the surgery meeting!!!! We were happy with our conference with the surgeon, Dr Lessin. Nathan's surgery is scheduled for next Tuesday, August 21st @ 8:00am. It is expected that the surgery will be at least 5 hours. Nathan's surgery is complicated by the fact that his tumor is on both sides of the diaphragm. That means that they will need to cut it into two pieces in order to remove the tumor. That will result in a painful recovery for Nathan since it will hurt him to breath. We were told that he may need to be on a ventilator for a day or 2 to breathe for him. Another potential complication is the arteries in the area of the tumor. Several important blood supplies can't be cut so they will leave tumor before they get too close to the artery. Due to the complication of his surgery, Nathan will be attended to by Dr. Lessin and his surgical partner. They will also have Dr Heilman (neurosurgeon) on call incase the tumor has encrotched on the spinal column again. We were told to expect that Nathan will be in the hospital for at least a week.
So unless the CAT scan on Wednesday reveals anything drastically different, that is our game plan.
Stay tuned since the MRI is planned to tomorrow.
Sunday, August 12, 2001 at 09:47 AM (CDT)
Hello everyone,
Well I didn't think that I would be updating everyone until after tomorrow's appointments. I was wrong. Just when you think that you have smooth sailing ahead, a new wave comes. Only this time, it wasn't Nathan, but Kearsten.
Kearsten had been lethargic and was running a low grade fever 100-101 from Tuesday until Thursday night. Friday morning the fever disappeared and she seemed better. When I picked her up at Mandi's on Friday afternoon, I had to wake her up from her nap. The fever was back and now she had red spots on her face & torso. I was really worried that she may have gotten chicken pox. Actually I freaked. Chicken pox isn't normally really bad, but it is when you have an immuno-suppress brother. Chicken pox can be deadly to Nathan, so any exposure to the virus means an immediate trip to Boston.
Well, the rash didn't form any blisters so chicken pox was ruled out. However it keep spreading all over her face, head, neck, and down her back & stomach. It looked awful and started to itch. When I brought her to the doctor's office, he said that it was a "nonspecified viral infection". (Well doesn't that just make you feel better.) Anyway, I gave her some Benadryl for the itching. Time to wait it out.
Fortunately, today the rash has died down and she is starting to act like her old self. I think that the worst part is over now and Don missed it all. Kearsten is primping now (showering, nail polish, dressing up) for Brookelyn's birthday party. All of the Gingras kids have been exposed already so it's okay to go over. Kearsten is going to sleep over tonight. The girls will have a blast! Good luck Eric & Mandi.
Don & the boys had a blast at Peidro's fest this weekend. Don just called and they should be home soon.
Kearsten & I are going to wrap the present now and make a card, so Good-bye!
Wednesday, August 08, 2001 at 12:33 PM (CDT)
Hello Friends & Family,
Nathan had his blood counts checked yesterday and everything is back to normal. Hopefully that will be the end of the chemotherapy for him especially since he is now growing hair. He has never had hair & we are looking forward to this new change.
Next Monday will be a big day for us. In the morning, Nathan will be getting the first of four tests to re-evaluate the tumor status. To prepare for all of these tests, Nathan can't eat for 6 hours before the test but he can have clear fluids (not formula) up to 2 hours before the tests. Thank goodness he likes apple juice! This is due to the fact that Nathan must be sedated for all of these tests because you can't tell a toddler to sit still for 30 minutes while the scans are taken. Fortunately, the waiting without food is the hardest part of the scans since all are painless except for the bone marrow aspiration.
After his bone scan, we have an 11:00am pre-operation appointment with the surgeon. Finally we will found out how they will remove this awful thing and what complications may be expected. We are creating a list of questions so we don't forget to ask anything. We are so nervous. We have waited for six months to reach this point. Now that it is here, I am so scared of the unknown.
Please pray for Nathan next week so that his scans show additional shrinkage of the tumor and no bone marrow contamination. Pray for a skilled surgeon with steady hands (no coffee), successful surgery, and speedy recovery.
Please feel free to use the guestbook as a way of sending Don & I your support and kind thoughts. We read your comments almost everyday. Both of us have found them to be a great source of strength to know that so many of you are out there supporting us in our journey.
Thank you,
Bridget
Friday, August 03, 2001 at 02:08 PM (CDT)
Hello All,
As anticipated, this week has been wonderfully uneventful. Nathan is doing great & is as strong as ever. Now that he is walking, he's into everything and now he thinks he can climb on everything too. Earlier this week, Mandi found him on top of her kitchen table. We won't be able to take our eyes off of him.
Kearsten is also testing the waters these days. She has developed a tremendous attitude lately which resulted in her getting into lots of trouble on Wednesday. It is becoming harder to dicipline her with us gone with Nathan so much. We are trying very hard to maintain a normal life and treat the kids appropriately.
Many of you have asked us how we do it, what makes us strong, etc... First of all, we do it because we have to. Actually, Nathan is the one doing the hard work & we just have to "look after him and care for him".
Here's a poem that was forwarded to me that explains "how we mentally keep it together". It was written by another parent of a child with cancer.
The Strength of an Egg By Juliet Freitag
Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albiet flattering,it isn't quite true. It is more like the strength of an egg.
An egg, you ask? Yes!
If you'll think about it, you'll see my point. An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be so smooth or solid.
Most children, at some point are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an ever slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.
A rock, on the other hand, is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock.
It takes a lot more than pure hardness to hold the hand of hope.Parents of children with cancer are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. "Balancing an egg" while running a household, going for doctors' visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed!
Occasionally, the angle will be off and the shell will break,shattering hope and all the neatly secured appearances of a truly fragile existence. Unlike Humpty Dumpty, though, parents of kids with cancer will pick themselves up and put themselves back together again.
Tuesday, July 31, 2001 at 08:52 AM (CDT)
Hello everyone,
Nathan is doing & feeling great. On Friday, he had his blood counts tested. The results showed that is red blood cells were dropping, but no transfusion was necessary. On Monday, we had his counts redone & Nathan is rebounding on his own. No transfusions will be necessary this round hopefully. This counts won't be redone until 8/7. We have also been given the okay to stop the GCSF shots since his white blood counts are doing so well right now.
At least for this week, Nathan will be a normal 14 month old whose trying to keep up with his 3 year old sister.
Tomorrow is August. Finally it is here. We are so anxious for Nathan's re-evaulation tests, MRI, cat scan, bone scan & bone marrow aspiration. Once all the results are in, we get to meet with Dr. Lessin to discuss the surgery. I have so many questions for him.
All is fine with the rest of the family & we thank you for checking in on Nathan.
Bye.
Thursday, July 26, 2001 at 09:53 AM (CDT)
Hello Everyone,
It has been over a week since I updated everyone & I'm sorry to keep you waiting. A lot has happened this week. On Friday the 20th, Nathan received his last scheduled chemo. Everything went great and since it was a 24 hour visit, Nathan & Don were home on Saturday morning. We had a nice and relaxing weekend especially since the weather is so nice. We spent the afternoons at Lambert's resort on 149 Lodge Street. We even bought a kiddie pool for Nathan & Meagan to play in.
I'm on furlough this week. Finally some much needed time off even if it is unpaid, I don't care.
Monday morning wasn't so great. We woke up to find blood stains on Nathan's outfit. It took us a few minutes to discover that Nathan had a hole in his central line. So off to Boston again, this time with Mom. Thankfully the line can be repaired and new one didn't have to be surgically put in.
By 11:30 the surgical resident had repaired his broviac, however 15 minutes later the repair gave way & out came more blood. (Remember that the line goes directly into his vein therefore if the line has a hole in it, it will continue to bleed like an open wound.) I rushed him to the nurses & they clamped the line. We had to wait 2.5 hours for the surgical resident since he was in OR. Meanwhile Nathan starts vomiting all over me & himself. Finally the resident comes, and fixes the line. Nathan was very upset & had to be held down by three people to get the repair done. It was very tramatic for both, Mom & Nathan.
Tuesday was much better! Roxanne & Mike went with Don & I to Six Flags. We had a blast & the Superman roller coaster is great. Don was addicted.
Michelle came down from Colebrook on Wednesday to spend a few days with us. We spent the day at Lambert's resort with the kids. Nathan isn't eating great & is sleeping extra so we are having his blood checked on Thursday. We think he may need red blood cells.
Nurse came & by noon we should have the results of this blood counts. We will keep you posted.
Thanks for reading our web page & for caring & praying for Nathan.
Much love,
Bridget
Saturday, July 14, 2001 at 03:09 PM (CDT)
Hello again,
Nathan went to Boston yesterday, however it was a very quick trip. When the clinic rechecked his blood counts, it was discovered that his platelets were recovering on their own so a transfusion wasn't necessary.
The dates for Nathan's upcoming scans are:
August 13th - Bone Scan
August 14th - MRI
August 15th - CAT scan
We don't know if they will redo the bone marrow aspiration yet. So hopefully by Aug 20th all the test results will be in & we will be able to meet with the surgeon. We will be so happy when his tumor is out of him.
I finally added a few pictures to the photo album. I will try to get a better picture of Kearsten & Nathan together. It is very fortunate that I have access to the digital camera at work.
Talk to you soon.
Wednesday, July 11, 2001 at 12:19 PM (CDT)
Hello Everyone,
Nathan is doing very well & walking around like any other 13 month old. It is very funny to watch him learn to walk especially since he wants to keep up with Kearsten. Impossible for now.
We had his blood tested today & he is holding up quite well. Both his red & white blood cell counts are good. Unfortunately, he has an appointment at the clinic on Friday to get platelets. That's okay because if he didn't get the platelets, he would be a walking black & blue especially since he is still using his "sea legs".
We enjoyed a wonderful weekend together as a family! We went to Scott & Francoise's party. We got to enjoy a great BBQ, wonderful company & had some much needed downtime. It was a real treat!
I also wanted to spread some good news!
1) My aunt, Diane, got wonderful news on Friday. The surgeons had removed all of her tumor, none of the surrounding areas (lymph nodes) were contaminated with cancer & her tumor was confined to the colon area only. She is thankfully on her way to a full recovery & she's in our prayers daily.
2) Brandi & Rocco were blessed with a new baby girl on 7/6. We congratulate them & welcome Cleo Marie into this world.
Thanks for checking in us.
Friday, July 06, 2001 at 12:32 PM (CDT)
Nathan's coming home today finally. He hasn't had a fever spike since 2pm yesterday & he's starting eating & drinking again. He gets his last antibiotic dose @ 12pm then I will pick them up. He did get a blood transfusion yesterday to help boost his red blood cell count so he should be ready to go.
He did get to do something fun while at the hospital. New England Aquarium came to the playroom on the 8th floor & brought some aquatic life with them. Nathan got to hold a starfish, snail, sea urchin & frog. Don said that Nathan wasn't sure how to act (surprise, nervous, inquisitive, excited.... these were probably a few of the emotions he was feeling). Don stuck a starfish on his head & got a picture of it. I can't wait to see the picture.
Kearsten & I are going to get our men, then we are going to visit Shauna & Kenny. We are very excited to meet their new addition, Ms Makaela Danielle Harring.
Have a good weekend.
Thursday, July 05, 2001 at 09:46 AM (CDT)
Hello everyone,
Well, we were home for 1 day & Nathan started to get a fever on Monday. We watched his temp that night & it stayed around 100F. (Not normally bad, but it is for a child who is immuno suppressed. Whenever a fever hits 101F, Nathan is admitted for a minimum of 48 hours so blood cultures can be done.) On Tuesday morning his fever was down, however he was irritible and stopped eating/drinking so we went to the clinic(reference used for the office of our oncologist in Boston). By the time we got there, Nathan's fever was back & we were admitted into the hospital. Tuesday night was rough. He spiked a 103 fever and was up all night. Wednesday was a little better, but every 7-8 hours his fever spikes. The good news is that his blood cultures have shown no bacterial growth. Nathan has started drinking again on late Wednesday night which is a good sign so he got 2-3 hours off the IV, however he needs to drink more to be off the IV completely. I am back to work now so Don is with him. Nathan's spirits are good as long as the fever is suppressed. I will let you know when he's home again. Hopefully that's tomorrow.
Sunday, July 01, 2001 at 06:54 PM (CDT)
Hello again,
It's Sunday night & we've finally returned home from our latest trip to the 7th floor at New England Medical Center. Nathan was very good & treated like royalty. Friday he got the Carboplatin which makes him very nauseated(sp?) & he got the VP-16 which he tolerates. Sat & Sun more VP-16. We almost had to stay extra days because Nathan wouldn't drink any fluids which means that he'd quickly dehydrate if he wasn't on IV. Doctors won't let you out if you don't drink! Thankfully Nathan started feeling better & drank dilute apple juice so we could go home today.
Kearsten stayed at Aunt Terri's & Uncle Pat's this weekend. She had a wonderful time at the spa/vacationland resort.
If you would like more informaton about neuroblastoma, I have added a link to another website which is very good. It is called "The Neuroblastoma Hope Foundation" and covers all aspects of treatments, staging, definitions etc. If I use terms that you are not familiar with, please go to that site for information.
Thanks for checking in.
Friday, June 29, 2001 at 09:49 AM (CDT)
Hello,
Nathan was cleared to get chemo today. His blood counts have rebounded quite nicely now that we are giving him GCSF shots every day. GCSF stands for growth colony stimulating factors which are used to cause his bone marrow to create more white blood cells. We will be at the hospital through Sunday since this is a three day treatment and hopefully we'll be released Sunday afternoon.
We are also hoping to get Nathan's schedule for evaluation tests that are required for this surgery. Tests required are MRI, CAT scan, bone scan & bone marrow. The test will let the surgeons know exactly where the cancer is. I will post the schedule when it is available.
Some additional information for everyone. On Thursday, June 21st we had Nathan's hearing tested and it was discovered that up til then Nathan has not had any hearing damage. Great news! There are three main side effects from the chemo: heart damage, kidney damage & hearing. So far all seem to be fine.
Thanks for checking in.
Monday, June 25, 2001 at 11:34 AM
Hello All,
Since this is the first posting I will provide some history and details about Nathan's chemotherapy regimen.
It all started with mild fussiness in January, 2001 that we associated with teething. We started having to give Nathan Tylenol & Advil to keep his low grade fever down and help sooth his pain. Nathan was very clingy and got quite irritable if we didn’t give the pain reliever. After two weeks of this, we brought him to see Dr. Lynch. Nothing was found, he couldn’t be healthier and again it was suggested that is was just teething causing the fussiness.
Another week passed. Mandi calls me at work on February 1st and saying she doesn’t want to worry me, but Nathan’s side has a large bulge in it that wasn’t there before. We schedule an immediate appointment with our doctor’s office, unfortunately Dr. Lynch is not in. Don brings Nathan. Three different doctors look at him & they don’t know what it is. An ultrasound is ordered for that evening. Finally by 7:30 pm we discover that they don’t see anything out of the ordinary.
Not satisfied with that answer, we called Dr. Lynch that next day for a visit. He agrees that Nathan’s bulge is new and wants to investigate further, but he doesn’t think there is any reason for concern. A CAT scan was scheduled for Monday, February 5th. I picked up the contrast fluid that Nathan needed to drink Monday morning. We worried a lot that weekend.
Monday, February 5th
CAT scan first thing in the morning. Nathan is sedated with propifal. They look at the scan & consult with someone. Just a few more pictures they say. They don’t give us any information at all. When we leave the recovery room, the nurse suggests if we don’t hear from our doctor by early afternoon to call him. BUT there is a message from Dr. Lynch by the time we got home. We call back and leave a message on his voicemail. Within 10 minutes, he called us. He then informs us that Nathan has a very large tumor that he believes to be Neuroblastoma and he has already scheduled us to go to Boston’s Floating Children’s hospital the next day. We were devastated! Words cannot describe the emotions one goes through when their child is diagnosed with cancer. Nathan was just barely 8 months old, how could this be happening to us.
Nathan was diagnosed with Neuroblastoma stage IV on February 5, 2001. (The worst day of any parent’s life!)
Tuesday, February 6th
We took him into Children's Floating Hospital on February 6th for his appointment. However, by the time we got there Nathan had stopped moving one leg completely and the other was barely moving. That evening an emergency MRI was done which showed a large tumor in his chest and in his spine. The cord had been compressed almost completely. An emergency laminectomy was done that night. After 4 hours in surgery, we found out that Nathan’s surgery was completed and then time would tell if it was a successful. Two days later, he had regained movement in his legs.
Since then we have been on protocol CCG A3961. After four cycles of chemotherapy, there was no tumor left in his spine and the tumor in his chest was considerably smaller (approximately 75% reduction). We are currently finishing up with four more cycles of chemotherapy then SURGERY.
Chemotherapy Schedule
This page details the protocol (A-3961) that Nathan is following. It shows the day for the plan and the therapy and dosage. There are four main chemotherapy drugs used in this plan:
Agent Dosage Delivery
Carboplatin(carbo)18mg/kg IV over 1 hour daily
Etoposide (VP-16)4mg/kg IV over 2 hours daily
Cyclophosphamide(CPM)33mg/kg IV over 30-45 minutes daily
Doxorubicin (doxo) 1mg/kg IV over 2 hours daily
Protocol Outline
All patients receive Regimen A chemotherapy which consists of four treatment courses. Patients that are determined to have unfavorable biology are given Regimen B chemotherapy in addition. After chemotherapy, patients undergo surgery to remove or debulk residual disease. Radiation therapy may be given following surgery.
Patients are followed every month for 6 months, every 2 months for the next 6
months, every 3 months for the second year, every 6 months for the third year, and annually thereafter..
Course 1 (February 15)- Carboplatin IV over 1 hour on day 0 and etoposide IV over 2 hours
on days 0-2
Course 2 (March 9-11) - Carboplatin, cyclophosphamide IV over 1 hour, and doxorubicin IV
over 15-60 minutes on day 22
Course 3 (March 30-April 1)- Cyclophosphamide on day 43 and etoposide on days 43-45
Course 4 (April 20-22) - Carboplatin on day 64, doxorubicin on day 64, and etoposide on
days 64-66
Course 5 (May 15-18) - Cyclophosphamide on day 91 and etoposide on days 91-93
Course 6 (June 8)- Carboplatin, cyclophosphamide, and doxorubicin on day 116
Course 7 (June 29-31) - Carboplatin on day 137 and etoposide on days 137-139
Course 8 (July 20) - Cyclophosphamide and doxorubicin on day 158
Click here to go back to the main page.
----End of History----