Friday, December 24, 2010
I still feel your love on cold wintry nights
I still share your hopes and all of your cares
I'll even remind you to please say your prayers
I just want to tell you, you still make me proud
You stand head and shoulders above all the crowd
Keep trying each moment, to stay in His grace
I came here before you to help set your place
You don't have to be perfect all of the time
He forgives you the slip, if you continue the climb
To my family and friends, please be thankful today
I'm still close beside you, in a new special way
I love you all dearly, now don't shed a tear
Cause I'm spending my Christmas with Jesus this year
Play hard and have fun in heaven, Aidan Wayne
Wednesday, December 15, 2010
Me: Aidan, look at how much snow has fallen.
Aidan: Snow (nodding).
Me: Yes, snow. It's very pretty.
Aidan: It's a mess.
Me: Sometimes snow can be a mess.
Aidan: Momma will clean up.
I remember looking in the rearview mirror seeing his big smile...only 2 1/2 and he had it all figured out.
Monday, November 22, 2010
Saturday, October 30, 2010
Thursday, September 16, 2010
We visited some of the 4-H animals, the roosters and the bunnies. We saw the freakishly big pumpkin. I think it weighed in at 438 pounds.
Of course we indulged in some fine fair food (Patty calls Sandwich Fair the glutton bowl. That's pretty accurate). If anyone from the neurosurg team at Children's is following you will remember "the bacon diet". How that made Aidan laugh! Well, hands down, my FAVORITE thing we sampled was deep fried bacon drizzled with chocolate. It was complete genius and I hope it made you smile buddy!
This year they had antique fire trucks. Interesting that they didn't have them at the fair in the past? Hmmm. Aidan must have let them know this would be an awesome addition...he loved fire trucks.
Uncle Matt-Matt and Ron stole a picture on one of the tractors. Matt tries to get one every year.
Lastly, we took a ride on the train that went around the fair...I'm sure that would have been Aidan's favorite part of the day. A boy and his trains...
We had a great time and I hope you did too, Aidan! I know you were with us, sweet boy.
Wednesday, September 8, 2010
On behalf of my entire family I would like to say THANKS ...
Many of you have cried, listened, sent us cards, called, brought us food, hugged, reminisced or even sat quietly with us, and we appreciate each and every one of you.
Thank you for all the kind words, prayers, comments and positive thoughts, they all mean so much to us. I apologize to some of you who have attempted to comment but could not, I adjusted the settings so hopefully it is fixed.
I would also like to thank everyone who has donated money to Aidan's trust, every cent will go toward the research and treatment of childhood Medulloblastoma.
These last six weeks have been extremely rough and we're all taking every day as it comes. We appreciate all the support.
As I promised I will keep this blog going, Aidan was too special to me not to let the everyone know what an amazing little boy he was.
The last few days I have been taking walks through the park, it's been windy, Aidan liked to feel the wind on his face. I miss him terribly.
Lots of Love - Patty
Saturday, July 31, 2010
Aidan's arrangements have been finalized. His death notice will be in the Sunday Chicago Tribune.
Visitation Tuesday 3:00 to 9:00 pm at Williams-Kampp Funeral Home, 430 E. Roosevelt Rd., Wheaton (1 block east of Naperville Rd.)
Funeral home prayers Wednesday 9:15 am then to St. Michael Church, Wheaton. Mass 10:00 am.
Donations to Aidan's trust are very much appreciated:
You may make checks payable to The Aidan Wayne Manning Trust
(Please write the account # 2910 0745 0433 in the memo line).
Bank of America
P.O. Box 29966
Phoenix, AZ 85038-0966
Every cent in the trust will benefit childhood Medulloblastoma research and treatment.
We sincerely appreciate your thoughts and prayers during this time.
Friday, July 30, 2010
I am deeply saddened to share this news...
Our strong, brave, gentle boy has left this world. Aidan passed away this afternoon at home in our arms. I felt his little soul leave his body.
We will be making arrangements tomorrow (his wake will be Tuesday with a funeral mass Wednesday). I will share the details with you after they are finalized.
"When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight."
~ Kahlil Gibran
Thank you for your continued prayers for our family.
Monday, July 26, 2010
I write with a heavy heart...
We are at Children's. Aidan had his MRI today. It showed significant tumor spread both in his brain and spine (much worse than when he was initially diagnosed). It is hard to imagine that just 6 weeks ago, his MRI was clean.
We have had discussion with his oncologist who stated that treatment at this point will unlikely be curative, but possibly extend his life for a little while.
We are sad beyond words...how does one even begin to say goodbye to their child?
I will update with more info as I am able.
Sent from my BlackBerry® wireless device from U.S. Cellular
Thursday, July 22, 2010
I hope this e-mail finds you well and that you have been enjoying this hot summer. Aidan has been feeling relatively well. We have been so happy to have him home...he has managed to stay out of the hospital since June 14th (a record for this little man).
We are asking for you to keep sweet Aidan in your prayers.
He has an MRI of the brain & spine this Monday 7/26. It is essential that we have a clean scan to move forward to stem cell transplant.
Unfortunately, we have received some discouraging news...Aidan had a CT scan a couple of days ago that may have showed some disease progression. However, the quality and resolution of the film was low (the scan was done to evaluate the fluid in his ventricles, it is not the ideal film to interpret disease status- MRI is the gold standard). Of course, this news was frightening to us nonetheless.
So, we lift little Aidan up to God and ask that He goes before him to the MRI scan. We pray the MRI results be clear and encouraging and show that Aidan is improving.
We thank you for all of your prayers and support during this very difficult time. I will update next week with results.
Sent from my BlackBerry® wireless device from U.S. Cellular
Monday, July 5, 2010
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Thursday, July 1, 2010
I write with very good news...
Aidan has been home for 17 consecutive days. That is HUGE for him! The last time we could say that was in December prior to his diagnosis.
He had his CT scan yesterday to evaluate the status of the fungal infection in his lung. It looks clean...no evidence of fungus. It's truly amazing as fungal infections typically take months of treatment before seeing good response. God is good...He is watching over this sweet boy. Thankfully, that means Aidan will not require any surgery.
The plan now is to do oral chemo at home beginning today for 5 days. Once he recovers from that (approximately a month from now), he will probably be ready to move to stem cell transplant.
We are so very thankful to be able to have him home and provide him some "normalcy".
We are also thankful to have all of you as friends. You have all been such great support for us. We truly appreciate all of your prayers and kindnesses.
We wish each of you a happy and safe holiday weekend.
Sent from my BlackBerry® wireless device from U.S. Cellular
Wednesday, June 16, 2010
I am happy to say that Aidan is finally home. He was released late Monday night after spending another 2 weeks at Children's.
His lung surgery went okay. They were able to remove 1 of the 2 nodules. The one that remains was deeper in the lung tissue and to remove it, it would require complete resection of the lower lobe of his right lung.
Pathology report came back that it is indeed fungus. Etiology is still pending, but aspergillus is suspected. He is on two antifungal agents.
This infection will impact stem cell transplant...
The transplant team will not begin treatment until he is on 4-6 weeks of antifungal therapy and demonstrating favorable improvement via CT scan. We are not in a good place here as that is too significant of a delay.
The plan now is to have a CT scan in 2 weeks to view his response to the meds. If it demonstrates improvement, Aidan will take an oral chemo medicine at home for 5 days which will remain in his system for 4 weeks. That should buy us enough time to move to transplant without incident.
If, however, the scan shows worsening or no improvement in the fungal infection, we may have to consult surgery to have it removed so that transplant isn't delayed any further. Of course it is our hope and prayer that he shows good response to the medicine. I cannot imagine having him undergo another surgery. He has been through too much already.
We had some positive news on Monday. Aidan had his brain and spine MRI and it looked as well as the last scan. That was all we could have hoped for.
We are hoping to stay out of the hospital until transplant. It would be nice to have him enjoy some time at home.
Thank you for your continued well wishes and prayers.
Wednesday, June 9, 2010
We are still at Children's. I am going to begin calling it our second home. Let me start by saying that Aidan is definitely feeling better the last couple of days. Again, Aidan is keeping everyone busy...
We were admitted on Memorial Day for a GI bleed which seems to be healing well for now. With his 4th cycle, he had a bad gut. After his 5th cycle it has been a VERY bad gut. I am scared as to what stem cell transplant will be like.
Since we have been dealing with belly bleeding and some significant pain, an abdominal x-ray was taken. His belly looks okay (the lining of his gut will need to be looked at via endoscopy at a later date). However, they caught a glimpse of his right lung which showed an abnormality. A chest film was taken, followed by a chest cat scan last night. Aidan has 2 nodules in his right lower lung. It is highly unlikely that this is tumor spread as Medulloblastoma very rarely moves outside the CNS. It is believed to be an infectious process, most likely fungus. He is scheduled for surgery tomorrow to have them resected.
For as awful as this is, we are so very thankful that this was caught now. If he was to move to transplant with a disseminated fungal infection, it would have certainly taken his life. God is watching over this sweet boy.
We have a laundry list of things to accomplish prior to transplant...endoscopy, lumbar puncture, MRI of his brain and spine to determine tumor status, and treatment of this infection.
We are hoping treatment does not delay transplant too long. Fungal infections are incredibly difficult to treat and the courses are typically long. If we are unable to go to transplant in a timely manner, his oncologist stated that it is possible he may receive an abbreviated chemo cycle in the interim.
It looks like he will remain in the hospital at least through the beginning of next week. Please keep him in your prayers for an uneventful and successful surgery tomorrow. I will update when I am able.
Thursday, June 3, 2010
Aidan remains at Children's. Thankfully, they have changed some of his medications and it seems to have helped a little in controlling his GI bleed.
We were able to breathe a tiny sigh of relief on Tues morning as it was relayed to us that the TWO results of his clotting times were incorrect (only 24 hrs later). They are, in fact, normal. However, this error, along with the fact that they also relayed a false hemoglobin count to us, painted a very poor clinical picture of Aidan. Quite scary and caused him an unnecessary visit to the ICU. I am beyond displeased with the manner in which things were handled and everyone of importance knows about it. I will say no more except that the people in the lab here are "special".
We had more excitement...on Monday night Aidan ripped out his PICC line (the central catheter in his arm for IV access). Good times. Apparently, he thought he didn't need it anymore. He was wrong and we had a visit to IR to have it replaced Tues morning.
Aidan will probably be here a few more days as he is back on a morphine pump for pain...the mucositis is back. It looks like his white blood cells are just starting to recover and once that happens, the mucositis is able to heal and his pain will subside.
He also spiked a couple of high fevers and is back on antibiotics. We are awaiting the results of his blood cultures.
It's never a dull moment here.
Thank you so much for all of your prayers and well wishes. I will keep you posted.
Monday, May 31, 2010
Again, I write from Children's. Aidan was admitted to the ICU this afternoon. Upon waking this morning, he was vomitting blood. Already today, they have transfused blood and platelets. When a patient is actively bleeding, they run a lab to test clotting times. Aidan's were double what they should be (meaning it is taking him a lot longer for his blood to clot). Of course, this puts him at risk of bleeding anywhere. So, we are in the ICU to have him closely monitored. No one has given us a clear reason as to why the elevated level. I'm sure that there will be many more tests run tomorrow.
His chemo cycle a couple of weeks ago went well. It was, thankfully, uneventful this time. He will have another full MRI on 6/14 and will go to stem cell transplant shortly thereafter.
Please keep Aidan in your prayers. We are hoping for a very short stay here in the ICU.
I will update you as I am able.
Saturday, May 15, 2010
Thursday, May 13, 2010
I write from Children's. Aidan is in for his 5th round of chemo. Currently, he is in the procedure suite for his routine audiogram (one of the chemo agents he receives is ototoxic, so his hearing is monitored closely).
Aidan has had a couple of very good weeks at home. He has been happy and feeling really well. We were able to have a couple of fun outings...Mother's Day at his uncle Dan's and he was even able to attend his favorite music class. So much fun! It is nice when we can provide some normalcy for him.
We will be in the hospital through the weekend. Hopefully, we will not experience any complications this time and can go home on Sunday. Aidan's 3rd birthday is on Monday and we would love to celebrate at home.
Please keep sweet Aidan in your prayers. I will be in touch.
Friday, April 30, 2010
Aidan is feeling much better. We will be discharged this afternoon after he receives more blood and platelets. We look forward to having a nice quiet weekend at home. This stay was much longer than anticipated. Aidan will probably be back at Children's during the second week of May for his 5th cycle. We should really get a place in the city as we are here much more often than we are home.
Aidan's belly is much better...no more cramping and much less poop. Everyone is happier.
He continues to hemorrhage from his bladder. He was on a morphine pump to control the pain from passing the blood clots. It was awful. He has been receiving platelets everyday (sometimes twice) to help control the bleeding. It seems to be improving slowly. We have been told it just takes time.
It has taken Aidan much longer to recover from this last chemo cycle (a common side effect from multiple rounds of chemotherapy). Usually his white blood cell counts are at zero for 5 days or so. Today is day 15 and we are just starting to see a few...very scary. I guess this has provided us a little glimpse as to what the next couple of months going into transplant will be like.
We have some great news to share! Aidan had his MRI on Monday and the scan was encouraging. His brain looks remarkably better and his spine looks about the same. If you recall, there have been questionable areas in the spine with previous studies. It is uncertain whether they are post-operative changes, scar tissue from the multiple surgeries and infection, or tumor spread. Typically, if you see good response to chemo in the brain, the spine usually improves as well. That leads one to believe that these changes are more likely to be scarring. That being said, when you are dealing with an aggressive tumor, the last thing you want to do is make assumptions and be led blindly. Aidan's 5th cycle and the myeloblative chemo prior to stem cell will be telling as to our next step if no further MRI changes are seen. We may need to make some very difficult decisions as to radiation treatment in the next few months. Sometimes it is hard to focus on just one day at time. We are just so very thankful that he has been showing good response and pray that we are blessed with wisdom to guide us in making good decisions for his future care.
That's all for now as I have to pack up so we can leave downtown just in time for Friday rush hour traffic. It's truly absurd!
Thank you for all of your good wishes, prayers, and support. They are so appreciated.
Sunday, April 18, 2010
Aidan has been busy...I will start with the good news. Unfortunately, it's true, not so good news follows.
Stem cell harvest went well. They were able to get a very good collection. Enough cells for more than one transplant if need be. Hopefully, he will engraft well with one, but a back-up is comforting.
Another positive note...Aidan has completed his 4th cycle. Only one more to go and then on to a myeloblative high dose chemo regimen immediately prior to stem cell transplant.
Now for the not so good...this past cycle was very rough on Aidan.
One of his chemo infusions is bladder toxic and Aidan has been having visible blood in his urine. He was sent home on IV fluids continuously to flush out his bladder. Hemorrhagic cystitis can last two weeks or two months. We are hopeful that it will resolve well enough so that he is able to move forward with his 5th cycle in a couple of weeks.
If you are eating, put your sandwich down or skip to the next paragraph. Aidan has acquired a very nasty stomach bug (c diff for all you medical folks). Terrible stomach cramping with multiple episodes of mucousy diarrhea (oh the diaper rash)! A scary bug for an immunocompromised patient.
Another lovely side effect of cumulative rounds of chemo is mucositis. Painful inflammation of your GI lining from your mouth to your bottom. Enough said.
This is where Aidan gets busy! We were released from the hospital on Tuesday afternoon after completion of his chemo. I brought Aidan back through the ER on Wednesday night after changing a diaper that had more blood in it (sorry). He was re admitted. He was released on Thursday night about 11pm after being given fluids, blood and a unit of platelets. He had labs drawn again on Friday and had to come back for another unit of platelets . It is now Sunday...yep, I am writing from Children's. He was admitted this afternoon. The past 2 days have been awful for him. It has been difficult to watch. He has been in a considerable amount of pain and has been unable to keep his medicine down, let alone any nutrition. Thankfully, they are giving him morphine for his pain and he is resting comfortably. I am hopeful that his doc will start him on IV nutrition tomorrow. We are hoping to quickly resolve some of these problems and that this will be a short stay.
Everyone asks "what can I do"? Continue to keep Aidan in your prayers. Visit Life Source to donate blood and platelets (yes, you can donate those also). Resources are always too low (and Aidan is keeping the blood bank busy).
I will update with future happenings. Good night.
Saturday, April 3, 2010
I hope this e-mail finds you well. Aidan is doing good. We are enjoying being at home. It is very nice to have good coffee and the ability to shower sans flip-flops!
We are slowly adjusting to what we call our "new normal".
Aidan will be back at Children's for a six day inpatient stay beginning this Wednesday 4/7. He will undergo stem cell harvest on Wed and Thurs. Thurs night he will start his prehydration fluids and his 4th cycle of chemo will start on Fri. Hopefully, we will be heading back home on Monday 4/12.
A little about stem cell rescue...
It will be necessary for Aidan to have a stem cell transplant at the end of his chemotherapy regimen. Medulloblastoma is a very aggressive tumor and requires a high dose chemo protocol. This high dose chemo is slowly destroying Aidan's bone marrow and therefore, his ability to produce his own blood cells. During stem cell harvest, Aidan's stem cells will be extracted from his blood and frozen. (He is currently being given a drug called neupogen which actually moves these stem cells out into peripheral circulation from the bone marrow). After he completes treatment these stem cells will be given back to him through a transfusion. This is going to be a big hurdle for him in the next couple of months. I will update you with info as we move forward.
Our little man is doing very well in day rehab at Marianjoy. We are very fortunate that we live so close. Aidan has speech and occupational therapy for 2 hours in the morning. We are then able to go home for a few hours to have lunch and a much needed nap. Then back for an hour of physical therapy in the afternoon.
We are seeing good progress everyday. I am so proud of him...he is working so hard. Yesterday in physical therapy, he actually took 3 steps...his first since December 20th. It was like watching him walk for the very first time all over again!
Thank you all for your prayers and acts of kindnesses (making dinners, bringing groceries, running errands, etc). We are so blessed to have such great friends!
Aidan has touched so many people's hearts and we thank all of you for touching ours.
Have a good Easter!
Hope and peace,
Thursday, April 1, 2010
Wheaton Bowl Fundraiser is Friday April 16th!!
Please RSVP to any of the people below ...
Amy Johnson email@example.com
Lisa Hernandez firstname.lastname@example.org
Grace Balinski email@example.com
Aidan's Army at Elmhurst Hospital Pharmacy
On behalf of my entire family, I wanted to thank all of you who attended the All About Aidan Fundraiser and all of you who donated directly to Aidan's trust!! Our family is truly blessed to be surrounded by such caring and generous individuals. I hope all of you enjoyed it as much as we did. Unfortunately I only took a couple of pictures. :( If any of you have any great pictures from the fundraiser please email them to me firstname.lastname@example.org!
I hope everyone has a wonderful holiday weekend, Enjoy the great weather!
Love - Patty
Wednesday, March 24, 2010
I am writing you from our family room couch. Yes, you read that right...Aidan is HOME! He was released from Children's on 03/17 to Marianjoy for inpatient rehab.
From the moment we walked into inpatient rehab, I requested that we be promptly discharged. Needless to say, they were hesitant and thought that I was a crazy person (which, these days is certainly debatable). However, they were unable to give me sufficient reason for him to be institutionalized. So, they discharged him Monday morning and he will participate in a day rehab program at Marianjoy.
Aidan is doing well. However, as his strength increases so does his frustration level. He needs help doing some things that he was able to do unassisted prior to becoming sick. He is often refusing help while sitting and eating. It is maddening for everyone. I keep telling myself that his strong will is what will help him get through treatment. So, we just have to deal with the frustrations in the meantime. UGH!!!
We were at Children's today to meet with the stem cell transplant team and road map the next couple of months. Aidan had his weekly chemo injection and a transfusion. We love the marathon days at clinic...11am appointment and out the door at 5:30pm just in time for rush hour. It is funny, you can laugh.
Aidan's white blood cell count should rebound within the next 5 days or so. He will have a break for 4-5 days then he will be given medicine to further stimulate white cell production prior to harvest. If all goes well, we would anticipate stem cell harvest in the second week of April. Harvest happens over 2 days and his 4th chemo cycle will immediately follow. So, he will have an inpatient stay for about 6 days.
I want to thank all of you who came out to show your support for Aidan at the fundraiser this past Sunday. It is heartwarming to know that he truly does have a whole army behind him!
Please continue to keep sweet Aidan in your prayers. As always, I will update you with future happenings.
Wednesday, March 17, 2010
Kitty will probably update soon, but I wanted to share the GREAT NEWS!! After 87 days at Children's Memorial, Aidan has been released to inpatient rehabilitation at Marianjoy in Wheaton. One step closer to home!
We look forward to seeing you at the fundraiser on Sunday to celebrate the steps in the right direction!
Please keep Aidan in your thoughts and prayers.
Thursday, March 11, 2010
I write with good news. This past week has been good for Aidan!
He had his shunt surgery last week Thursday. So far it has proven successful. He will have another scan this coming Monday to check the status of his ventricles.
My sister has created a blog for Aidan. http://aidanmanning.blogspot.com. If you have a minute, log on and see some pictures from last weekend when Aidan's uncle Matt came for a visit in a hotdog suit. Hilarious!
Aidan has been making good progress. Thankfully, he has been coming out of his cerebellar mutism. Those connections are starting to get reestablished. He is becoming more successful with feeding and is starting to say some more words. Physical therapy is difficult for him, but he is getting stronger everyday.
The MRI of his brain and spine this past Monday demonstrated more tumor regression since the last chemo cycle. Needless to say, everyone is pleased. We have finally been transferred to the oncology unit (it seems like such a milestone considering our first two rounds of chemo were in the ICU and then the neuro unit). As I write, he is in the midst of chemo cycle #3. He will finish this round Sunday morning.
If all continues to go well, Aidan will probably be able to go to rehab next week (midweek sometime). We are so looking forward to that.
Thank you for caring and hoping and praying for our sweet Aidan.
I will keep you updated.
Have a good night
Monday, March 8, 2010
Saturday, March 6, 2010
First off I want to THANK YOU for all your support and prayers for Aidan, Kitty and Ron.
Today is day 76 of Aidan being at Children's ...
Shunt surgery seems to be successful so far ... Yesterday Aidan was doing good, lots of smiles and giggles. We even think we heard him say "Mom"... the first word since his December 21st! Aidan is scheduled to have a MRI on Monday, we will then see what progress he has made with chemo. Please say a prayer and send all your positive thoughts his way.
We have a fundraiser planned for Sunday March 21st at Diversey River Bowl, if you are interested and have not received an evite please email me and I will add you to the list. email@example.com
Love - Patty
Wednesday, March 3, 2010
I first want to thank you for your outpouring of support, prayers and well wishes. We are truly blessed to have such a wonderful group of friends.
Aidan continues to make good progress, both physically and in spirit. It is very slow going, but we are seeing a little bit more of him each day. That little sparkle is back in his eyes and is so very good to see! He has even started flirting with his nurses with his little coy smile.
He is getting stronger each day and his movements are becoming more purposeful. He is even giving high 5s and shaking hands.
Finally, his eye movements are becoming more normal. He is beginning to track objects now.
Feeding continues to be a little bit of a struggle as he is relearning how to use his tongue. It is mind boggling at how much coordination it takes to chew and swallow...the things we all take for granted.
We are still waiting for Aidan to speak some words. We believe that we heard a raspy "mom" yesterday. It's a start.
His neurosurgeon is planning for his shunt surgery tomorrow (Thursday). Aidan has what is called low pressure hydrocephalus (not too common) and it has been quite a challenge to move his drain to a positive pressure which is ideal when placing a shunt.
We anticipate a full brain and spine MRI early next week to evaluate tumor status and expect chemo to follow shortly thereafter.
Dare I say it? If all goes well and he is internalized successfully, we may be going to rehab the third week of March.
It is truly amazing how far little Aidan has come...he is quite a fighter. Ron and I talk all the time about how when children are young, their parents are their biggest heroes. We have now realized that Aidan is OUR biggest hero.
It looks like we are going to have a busy week. As always, I will continue to keep you updated with Aidan's progress.
Friday, February 12, 2010
Aidan has finished his 2nd round of chemo yesterday morning. He tolerated it quite well...much better than anticipated.
His fevers have significantly decreased over the past 2 days. We were able to change some of his antibiotic coverage as we were concerned that was where the fevers may have been coming from. So far that change has proven beneficial.
Aidan is beginning to be more efficient with eating/swallowing. He even ate a cookie the other day...exciting for everyone!
He continues to make great progress in physical therapy. He is sitting with some support and is beginning to put a little weight through his legs. I would love to see him actually walk out of here when the time comes.
We are anticipating that in the next couple of weeks (after Aidan's blood cells rebound from the chemo) he will have surgery to internalize the drain that is currently in his ventricle (shunt surgery). We are hopeful that some reconstruction of his skull can take place at that time.
Another MRI will be performed in the next few weeks to see the progress of his chemo treatments. Then he will begin his 3rd cycle.
If all of the above go well...we will probably be able to leave Children's in late March. Depending on his strength at that time, we may be spending some time at Marionjoy (a rehab facility). One step closer to home.
Please continue to keep our sweet Aidan in your prayers. I will continue to keep you updated as I am able.
Thank you for all of the Valentines Wheaton Montessori School!
Enjoy your weekend.
Monday, February 1, 2010
Good evening dear friends...
It is a good evening! I have attached a picture of my Aidan. Take a good look...it is a picture of a boy that is slowly beating cancer...
We have learned the MRI results. The cerebellum has shown a moderate decrease in tumor burden. As far as the spinal cord...there was increase in signal intensity around the initial tumor site extending into the cord. Aidan's neurosurgeon said it is not uncommon to see this type of image postoperatively. Or, it is possible that it may be an infection as it is in the location where the 2 previous drains were. Or it is possible that it continues to be evidence of tumor spread. Aidan's oncologist was obviously pleased with the evidence of tumor regression and stated that the next round of chemo will be telling as to the status of the spinal involvement.
Therefore, he will begin round 2 of chemo tomorrow. I would have never guessed that I would be so happy to hear that my son could have chemo.
More good news...we have a new "address". Since I have last updated, we have been moved from ICU back to the neuro unit.
Physically, we are continuing to see good improvement in Aidan.
He is sitting up with assisstance and eating some small meals of pureed baby food. He continues to be mainly fed via NG tube for his nourishment. Communication is still lacking. However, he is starting to be more expressive with little groans and some more emotional crying (which is a very good thing). Today we have even seen a smile and a little giggle!
We thank each of you for your well wishes and ask you to continue to keep us in your thoughts and prayers as Aidan has a long tough road ahead. We are just so very thankful that he can continue down that road...one step at a time.
As always, I will keep you updated as I am able.
Thursday, January 28, 2010
Friday, January 22, 2010
I first want to thank you for all of your cards, e-mails and well wishes.
Aidan remains in the icu...
We have been battling high fevers and some infections due to his immune suppression from the chemo. We expect to see some rebounding of his white cells throughout this next week.
Some very positive things have happened over the past 10 days.
Aidan was able to come off of the ventilator 2 days ago without incident. He has been weaned off of his sedation, steroids, and high dose sodium/mannitol IVs for the brain swelling. His neurosurgeon has removed 2 of the 3 drains in his head. They were able to remove his arterial line and his catheter. Our little man is being, what we call, "de-tubed" left and right...it's very exciting (clearly, we have been here too long).
Aidan is tolerating his increasing NG tube feedings well. However, he continues to be on IV support so that his nutritional needs are met.
We have spoke to his neuro-oncologist regarding his next round of chemo. Aidan will have another MRI prior to see disease status. As I have already shared with you, Aidan has the most aggressive subtype of medulloblastoma. If the tumor spread remains relatively unchanged (or better yet, shows tumor regression), he will begin his next round within the next couple of weeks. If, however, we see a significant increase in tumor spread, it is unlikely that we will move forward with further treatment. We are hopeful that the scan is reflective of the positive response we saw immediately after his first round of chemo.
We ask for your continued prayers to restore Aidan to good health.
Hopefully, the next time I update, we will be back to the neuro/oncology floor as now there is little reason to keep him in ICU.
Again, thank you for all of your kindnesses and I will update soon.
Tuesday, January 12, 2010
I write again with positive news...
Aidan has completed his first round of chemo and tolerated it quite well. He now has 21 days off until round 2.
He started breathing over the ventilator (taking some breaths on his own) yesterday evening. That itself is excellent news...brainstem function is a good thing. We were very worried due to the amount of compression from the cerebellum as to the integrity of the respiratory center. Tears of joy...
Aidan had another MRI this afternoon which demonstrated considerable improvement in all areas. At first it was hard to believe that it was Aidan's study as the difference was so drastic.
We remain in ICU and, if all continues to go smoothly, will probably be here for the next handful of days before transfer back to the neuro unit.
We thank you for all of your well wishes and prayers. Aidan has a long road ahead of him and we ask for your continued prayers for him and the success of his chemo. We also ask for your prayers to bless Dr. Tord Alden and his neurosurgical team as he has truly saved our son's life twice in the past few weeks.
I will be in touch with updates as I am able.
Saturday, January 9, 2010
Thankfully, I am finally writing with a little bit of positive news.
We are thankful that Aidan has stayed out of surgery for the past few days (thank you uncle Matt- Matt for having a talk with him "no more shenanigans").
He had another MRI today which showed some improvement in that his cerebellum has relaxed a little bit more into the space that the surgeons had made for it in the last couple of surgeries.
The drains are performing well and are keeping the CSF from increasing in the ventricles.
As I write this he is undergoing his 2nd doses of chemo. Day 1 went very well. So far so good. Aidan remains in the ICU on a ventilator and we anticipate being here for a few more days. Hopefully, he will move back to the neuro unit in the coming week.
I ask that you pray for his chemo to be a great success.
We so appreciate all of your acts of kindness, prayers and well wishes.
I will continue to be in touch.
Thursday, January 7, 2010
I am hoping that one day soon, I will update with good news...
I believe that I last updated you on the 5th when they took Aidan to surgery to perform the craniotomy and remove part of his cerebellum.
After that surgery, he was moved to the ICU.
Things were looking very good all day on the 6th...Aidan was responding to our voices and opening his eyes to look at us. All was well until about 5pm. His symptoms began again. Another MRI was performed which showed a pocket of fluid filling up behind the cerebellum not allowing it to descend into the space the surgeons made for it the day prior. Aidan was, once again, immediately taken back to surgery. They took out more the the bone in the back of his head and removed even more of the cerebellum (1/3 in total of the left hemishere). They added 2 more drains so that fluid does not accumulate again in the posterior fossa.
Aidan remains in the ICU. The neurosurg and neuro-oncology team are unclear as to why Aidan's cerebellum has swollen up in the manner it has. It was decided today that he will begin his chemo tomorrow. We have run out of surgical options to create more room for the swelling and time is of the essence. The conditions for chemo are far from ideal. Aidan has 2 extraventricular drains and 1 subarachnoid drain in place and is also on a ventilator. His risk of infection is extremely high. However, at this point, it is everyone's hope that it will allow for a decrease in the cerebellar swelling and begin his long road to recovery.
Please continue to keep us in your prayers. I will update you as I am able.
Thank you all for caring, for praying, for hoping....
Tuesday, January 5, 2010
I am in complete disbelief that I am updating you again so soon.
As I write this Aidan is in surgery again. Over the past 24 hours, there have been some significant changes.
Aidan's cerebellum has swollen to the point where it is impacting his brainstem which basically controls everything (breathing, swallowing, vision, etc.) His surgeons are performing a decompression surgery which entails removing part of his skull and potentially part of the cerebellum itself.
Please continue to keep us in your prayers and I will be in touch.