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Sunday, October 4, 2009 1:37 PM CDT
Hi everyone,
It has been a while since I did an update. Baden continues to do well. He has his seasonal cold that usually comes every September and leaves in May. He seems to be enjoying grade 1. I am working with him on his phonics, reading and writing, and there is someone at the school helping him too. Alison had the same thing when she was in grade 1, but now she is a straight A student.
A couple of highlights for Baden this year have been the wedding of Kris & Andrew where he was a ring bearer. He looked so good in his tux! Also, we went to the Rock 'n' Roll Hall of Fame in Cleveland, Ohio. He loved it there. He especially was thrilled to see Michael Jackson's glove. Lastly, he saw KISS at the ACC with his dad. He made friends with the usher and she took him right up to the stage. Gene Simmons waved to him, and he got Gene's guitar pick so he was so excited. He dressed up as KISS when he went to the concert so everyone thought he looked great.
Anyway, thanks for checking. Please keep those that still struggle in your thoughts. In particular, we'd like to say hang in there Danielle, we love you.
Thanks for stopping by.
Lots of love,
Jo.
Friday, May 15, 2009 6:48 PM CDT
Hi Everyone,
We went to Sick Kids on Wednesday. Baden had a pulmonary function test, but it didn't go so well since he couldn't grasp the instructions. They will try again next year but for now we don't know if he has asthma or not. At his respitory appointment we got a doctor that was training before we saw the staff doctor. The student doctor was amazed with Baden and really enthusiastic to hear his story. He said he had only read about those things in text books before. It gives a good feeling as a parent to see the next generation of doctors coming through. Anyway, nothing new was learned at this appointment. We have to go back again next year for the same thing.
Baden's immunology appointment was good too. Dr. Grunebaum was pleased with Baden's progress. He said that Baden was doing well. I have to keep an eye on the GVHD spots on his tummy but apart from that all is well. We talked a bit about when Alison should be tested for WAS to see if she is a carrier but we have decided to wait for now.
After the appointment Baden had to give 10 vials of blood. He got so upset over it that he threw up in the clinic. We ended up having to get 4 people holding him down while they did it. It was a nightmare. I am so tired of this part of WAS. I hate that he has to keep getting poked. Anyway, they did end up getting all the blood they need so as long as we don't hear within a week, all is well.
Thanks for stopping by,
Joanne.
Saturday, March 7, 2009 8:25 AM CST
Hello All,
As you can see that I have not updated here since Christmas. Everything has been going well. Baden has had a typical winter so far. He has the sniffles almost all the time. He had a pneumonia scare and at 1 point he had petechaie and the doctor thought he might need a blood transfusion. I would be lying to say that that did not upset me. Anyway, after hours at the hospital we found out that his platelets were over 300,000 and that the marks on his body were some sort of rash. The rash went away in about 2 days. Baden also got a new GVHD spot in the last month, but the doctors are monitoring it and don't seem too concerned right now. Anyway, apart from all this everything is GREAT! We were away on a Disney Cruise and spent a week in Miami so that was the definate highlight of our winter.
Thanks for checking in. I hope that everyone is well.
Joanne.
Monday, December 22, 2008 11:06 AM CST
Hi Friends,
Just wanted to take the time to wish you all a very merry Christmas. The kids are bouncing off the wall in excitement. Baden has a little cold and so do I. We are going to the doctor this afternoon. Anyway, I have a hope that it will be gone for Christmas. Have a great Christmas.
Joanne.
Saturday, November 15, 2008 11:14 AM CST
Hi Everyone,
Just a quick note to let you know that all is well here. Ali, Baden and I just got back from a rainy, miserable, and cold Santa Claus Parade. Anyway, we are home now so we can warm up.
Thanks for checking in.
Joanne.
Tuesday, August 12, 2008 4:42 PM CDT
Hello Everyone!
Yesterday was 5 years since Baden's transplant. For me August 11 will always be Baden and Lucy's special day! I can't believe it has been that long, and I am so happy that he is still here with us. We went to watch my neice Sarah playing in a soccer game and I saw a shooting star. I couldn't think of anything I need more that what I have. It feels so great to be content. I guess my only wish is for other kids with immune disorders. I hope and pray that they will all get better and that treatments will improve and be easier for the kids. (One coincidence yesterday was that we met a woman that had given bone marrow to her brother 6 years ago - she told us about it after Lucy told her what a special day it was for her).
In the last few weeks we have been to a couple of events associated with immune disorders. This weekends SCID picnic in Toronto was great. The first SCID ever transplanted at Sick Kids just got married so it is a pretty exciting time. Also, they have their first SCID female that is pregnant. These pieces of news were so exciting. I got a chance to quiz Baden's doctor about the Wiskott Aldrich Syndrome as I learned such a lot about DNA and what makes it defective at the SCID conference in Virginia. The SCID Conference was great. Some of the best medical minds when it comes to SCID were there as well as 40 families. I have to confess that the best part was meeting CarolAnn Demaret, the mom of David, the bubble boy from Texas. She is the most graceful person I have ever met, and I hope that I have travelled this road with the same dignity, grace and courage that she has. Meeting her was one of the highlights of my year.
Since it is 5 years since Baden's transplant, I have decided to share my journal entry from that day with you. Here it is:
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Baden continued improving on Sunday so at 9am today he was moved back to 8B from the ICU. He looks great. Except for the fluid that continues coming from his head he seems alright. He even had a drink from a bottle.
At 7am this morning Lucy came for the bone marrow harvest. She was very cute. Wendy, the social worker, gave her a toy. She also helped her dress in her gown, and took photographs of the occasion. We went to the operating room waiting area with Keith, Sonya and Lucy. We got to see all of the doctors. Everyone seemed glad that the day had finally arrived. When Lucy went into the operating room, Sonya went in with her until she was asleep. We sat and had breakfast in the waiting room. I felt anxious and my stomach was upset. I was so relieved when Dr. Grunebaum came out to say that everything went well. When Keith and Sonya went into the recovery to see Lucy, we went up to 8B to see Baden. Since it was Monday, the doctors were on rounds. They were all pleased with Baden's progress. Dr. Grunebaum said that he got back from the lab, and they had an excellent sample from Lucy. The bone marrow was ready for transplant but they wanted to wait until 8pm which would be 36 hours after Baden's last chemotherapy.
By the time it was time for the transplant I was pretty anxious. Cindy was our nurse for the night so she would be doing the transplant. She seemed a little unorganized which stressed me out. The only concern over the transplant from the nurse's perspective was that Baden had high blood pressure. Finally at 945pm Cindy hung the bag of Lucy's marrow. It was red, just like blood. As I watched it go down the tube and into Baden's arm I prayed that it would work. They told us it would take about 4 hours so we left after about an hour. We had supper at 1030pm. We had been at the hospital for 16 hours. At the pub, Fred and I toasted Baden's health, and the beginning of his recovery.
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Please don't forget to sign the guestbook and congratulate Baden for 5 brave and amazing years!
Thanks for checking in.
Joanne
Thursday, June 5, 2008 3:45 PM CDT
Hello,
I am so happy to give the results of Baden's last Sick Kids appointment. At the lungs appointment he had a pulmonary function test that did not go that great since he is a bit young to follow the instructions. Anyway, the doctor was happy with him and we have to go back in 1 year. Now the really good news...Baden does not have to go back to immunology for 1 year!!! They told us this day would come and now that it has arrived all I can say is YEEHAW!!! I didn't get the results of the many blood tests that they did but since I didn't hear anything I assume it is good. Anyway, just wanted to share the good news and to let other Wiskott mom's that read this website know that the day will finally come when you have to go once a year too.
Have a great day,
Joanne.
Friday, May 9, 2008 10:52 PM CDT
Hello,
Just wanted to post a quick note to tell you about Baden's eye appointment. Baden went in to the hospital and put his gown on for his anesthetic. He also put on his Batman mask and cape to show how brave he is. He walked to the OR. Fred put this big white paper jumpsuit on to take Baden into the OR. Baden told his Dad that he looked like an ice cube. Fred took Baden into the OR because Mommy would have cried and that is not good for Baden. Anyway, Baden fell asleep really quickly and they looked at his eyes. It looks like the GVHD damage has stopped but he has severe dry eyes. The doctor didn't have many concerns but she said that if the dry eyes didn't improve they could 'plug' his tear ducts with silicone. This would be a last resort, and we have decided to try it with just the eye drops for now. They gave him a new glasses prescription, and then told us that he could be followed by a doctor back home if that is what we prefer (YES!). They also told us that if at anytime his eyes get red or puffy or he is complaining alot we need to bring him to Sick Kids right away. Overall we were pleased with the visit and are relieved that it is over!
We are back up to Sick Kids on May 28 for Immunology and Respitory.
Thanks for checking in.
Joanne.
Thursday, April 17, 2008 8:22 PM CDT
Hello,
We heard from Sick Kids about Baden's eye appointment. It is next week on April 24. I feel stupid, but I cried my eyes out about it. When I think of some of the serious surgeries and procedures Baden has had, this one is not too serious. Yes, he is having an anesthetic, but the risk is low. Still, I am stressed out. I think that I've got used to him being better and I can't stand the thought of him being poked again, and I'm scared in case they find something is going on with his eyes. Graft Versus Host Disease Sucks! Last night while he was sleeping I went and lay on his bed and watched him. I'm so lucky to have him, and I don't want him to have any kind of pain again even if it is just starting an IV. He has had enough of that already. Anyway, it is my birthday this weekend, and all I want is for Baden to be through this so that we can get on with our lives.
I will let you know how things go next week.
Thanks for checking in, and I'm sorry if I'm grumpy.
Jo.
Monday, March 24, 2008 8:59 PM CDT
Hello,
It has been a while since I updated. We just got back from Myrtle Beach. Hope you like the photo of Baden on the lazy river with his cousins Sarah and Josh. It was such a great trip. I didn't realize it until I was there, but I really needed that trip. I was so wound up going, and it took me 2 days once I got there to unwind. Once I did though, I felt alot better, and I have felt better ever since. This is the second year that we went to Myrtle Beach and I have to say that I enjoyed it more this year. It was fun going with the Masons and Aussems too.
Before we went I had a bunch of deadlines at work, I had an exam for a course I am taking at the local college, we were busy with swimming lessons, and Alison's dance lessons, I was busy volunteering at the hospital, Baden was busy getting his photo taken for a Canadian Blood Service campaign and we were dealing with Sick Kids regarding Baden's eyes. As it turns out the eye clinic does not want to risk doing the procedure in their clinic because they think there is too much risk sedating Baden in the clinic. We are now waiting for the eye doctor to get time in the operating room and they will give Baden an anesthetic. They want an anesthesioligist (bad spelling!) on site in case Baden has any issues. I have to confess that it is a worry. I can't wait till it is done. Hopefully there is no more GVHD in the eyes and we can move on. Anyway, at this point all that we can do is wait. I will update the web when I know more (no wonder I needed a vacation!!!).
I also wanted to let everyone know that Baden had a great 5th birthday. He is so happy at school. He is getting invited to so many parties. He is Mr. Popular. Who would have thought when he was born that he would ever get to go to kid's birthday parties. Anyway, that part of our life is going great.
I found this song that means alot to me. I first heard it about 6 months ago. I wanted to share the lyrics with you because as a Mommy this song (which is a prayer) has really captured how I have felt over the last 5 years.
He's My Son - Mark Schultz (Mark Schultz)
I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understnad
Each night as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
Chorus:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
Chorus
Can You hear me?
Can You see him?
Please don't leave him
He's my son
For those of you in Ontario, we are participating the the Sick Kids radiothon this week. Please listen in on Wednesday, Thursday and Friday. We will be on EZ Rock(97.3) at 2pm on Friday March 28, and the Mix 99.9 at 2:30 on Friday March 28. Please listen and donate to this great cause if you can.
Thanks for checking in.
Joanne.
Friday, January 18, 2008 6:14 PM CST
Hello Everyone,
Baden went to Sick Kids on Jan 9 and I purposely did not update until now because I was grumpy after the visit and I wanted time for it to wear off. Anyway, his Sick Kids visit was to the eye clinic. Our appointment was at 10 am but this clinic is notorious for running late. Anyway, they finally saw him about 11:15. They did an eye test which went really well and then they put drops in and told us to come back in 20 minutes. Anyway, after the 20 minutes he was so worked up that when he got in the room he wouldn't let the doctor flash the light in his eye. He hates bright lights and it has been like this for years. After his transplant he got GVHD in his eyes and it has effected his eye sight. He has a stigmatism and dry eye syndrome. Baden was screaming during the time with the doctor and Alison (who I had brought with me) was totally freaked out. There I am trying to comfort Baden and trying to explain to Alison that Baden was okay and that she should not worry. Anyway, the doctor finally gave up and said she couldn't examine him unless he was sedated. She said she wanted to make sure that there was no more GVHD and that his eye glasses prescription is right. Anyway, I was totally bummed by this because we have been so good putting the eye drops in lately and I went to Sick Kids expecting him to get discharged from the eye doctor. I guess if I had not got my hopes up I would have felt better. Anyway, they are going to send another appointment and we have to go there...again.
Enough complaining and feeling sorry for myself.
Thank you for stopping by. Please sign the guestbook so that I know you've been.
Jo.
Monday, December 17, 2007 1:53 PM CST
Hello,
Sorry it has been so long since my last update. I was gently reminded last week (thank you Maya) that I haven't updated for a while.
I have added a couple of new photos to the album, as well as Baden's homepage photo which is a photo of my whole family at a Christmas party at a heritage village.
Baden is still doing well. He started school in September, and has been struggling a bit with writing. He is still going to Kidsability as well. Anyway, this weekend I gave him a sheet to trace the alphabet and he did an amazing job. Hopefully he will be writing his name soon. He has shown a lot of improvement since he got his glasses at the end of October. He is going to Sick Kids eye clinic in January so hopefully they will see a big difference in his eyes.
The kids are so excited for Christmas. Alison wants a Nintendo DS. It is all she has talked about for months. She also loves webkins. Baden wants knights and superheros. He really wants some of the bad guys from the Batman series. We will have to see what Santa brings. Santa shouldn't have a hard time getting here with the foot and half of snow we got yesterday (and it is still snowing!). Anyway, I am off work for a few days over Christmas so I am looking forward to the break.
I wanted to end by wishing you a Merry Christmas and a happy new year. Thank you for visiting Baden's webpage. Please sign the guestbook so that we know you were here. Also, please remember those less fortunate than you this Christmas. We spent Christmas at Sick Kids a few years ago, and we will be thinking about all those families at the hospital for Christmas.
God bless,
Joanne.
Friday, September 14, 2007 4:03 PM CDT
Hello!
Well the day finally came. Congrats to Baden on his first day of school. He seems so little to be going to school (see home page photo taken on the first day!). He was so excited though, and he loves Mrs. Paikin his teacher. After the first day he told me that he liked school so much that he wished he lived there (Can't wait to remind him of this when he is a bit older!). I was so happy when he went to school. It is amazing to me that just a couple of years ago he couldn't be by any kids in case he caught germs and now he is in school. This is such a big milestone for him.
Also, thanks to everyone that came out to our fundraising lemonade stand for Toronto Ronald McDonald House. I am happy to say that we raised $1,326.41 in total. Thanks to CTV for covering this story for the third year in a row.
Anyway, that is it for now! Thanks for stopping by.
Joanne.
Thursday, August 30, 2007 7:31 AM CDT
Hello
This article was in the Guelph paper yesterday. Thanks to everyone that came to the Baden Klein Cup. I don't know the official amount yet, but it looks like we raised a couple of $1000 for the bone marrow transplant ward at Sick Kids.
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Young survivor set to open annual Baden Klein Cup
August 29, 2007
THANA DHARMARAJAH
MERCURY STAFF
GUELPH
Four-year-old Baden Klein is getting set to kick a soccer ball high into the air at the University of Guelph's Alumni Stadium today.
The boy is performing the honorary kickoff to begin the Guelph Gryphons fifth annual Baden Klein Cup.
He's come a long way, having spent the first 10 months of his life in an isolation chamber at The Hospital for Sick Children in Toronto.
Born with a rare immune deficiency disorder, Wiskott-Aldrich Syndrome, which makes him more susceptible to infections and bleeding, Baden wasn't to be exposed to other children or anyone with illnesses.
At six months old, he had a bone-marrow transplant, which was donated by his cousin, Lucy Mason.
The disorder affects only one in four-million boys and is a genetic disorder that passes from mother to son.
Left untreated, affected children do not reach adulthood.
The charity soccer games hosted by the Guelph Gryphons against the Ryerson Rams have been donating some of the funds raised to Toronto's Ronald McDonald House, where the Kleins stayed while Baden was at Sick Kids. The remaining funds have been donated to local Guelph families who may have endured a similar experience.
Last year the charity game raised $2,500.
Keith Mason, the Gryphon men's senior head coach said it was an ideal event for him to organize, which he hopes will assist other children as well.
"We saw all the suffering of the children at Sick Kids and what they have to go through on a daily basis in their fight to survive," said Mason, who quite often visited his nephew in hospital.
This year, the funds raised will go toward a new isolation chamber being built at the hospital for children with immune deficiencies.
Baden's mother, Joanne Klein, said he's beginning to understand there's a significance behind the annual game.
"He knows that things happened to him as a little kid that don't happen to every kid," she said.
Although, he'll continue to go to the hospital for checkups throughout his life, Baden will have some normalcy as he gets set to start junior kindergarten next week.
"He's so excited," Klein said. "I think I'm going to take about a hundred pictures."
Baden even joined the soccer league in Waterloo, where the family lives.
At his first soccer practice, Klein said, Baden cried when he didn't get to kick the ball. That's when his mother had to explain that he had to run after the ball himself.
The women's game will take place today at 4 p.m. and the men's game at 6 p.m.
Tickets for the game are $7 for adults, $5 for seniors and free for students. A family package, two adults and two children, is available for $17.
tdharmarajah@guelphmercury.com
Have a great day!
Joanne.
Friday, July 20, 2007 8:47 PM CDT
Hello Everyone!
Check out the new photos in the photo album, and the new home page photo taken of Baden in July at Port Dover, Ontario.
Hope everyone if having a nice summer. Things are good here. The kids have been at soccer camp this week in Guelph. Alison is really enjoying the time off school. She got to meet her grade 2 teacher on the last day of school and she is excited because her classroom is on the top floor of the school. It's funny the things that impress a 7 year old. Baden is doing really well. He is finally taking baby steps with his eating. He is trying some new things. It definately gives us hope that he will start eating with the rest of us soon. He is also showing improvement on getting his eye drops. If I rub his head and tell him to take deep breaths, he will let me give the eye drops. I still have to force his eyes open, but it is getting better. He is off to Sick Kids in about 3 weeks for his check-up with immunology. They will check him oer and do lots of blood work including the chimerism test to check if bone marrow is still working properly. He loves going to the hospital so it should be a good visit.
Last week Baden went to Sick Kids for a casting call to see if he would be okay for their Beleive campaign for the fall. He was really cute, and he charmed all the producers talking to them none stop about Batman & Robin. I would be surprised if he is selected to be in the campaign because he seems a bit young for what they want. We will have to see...I'll keep you posted.
Also last week we got the chance to speak at the Galt Country Club on behalf of Make-A-Wish Foundation. It turns out that the money raised at last years event sponsered 3 wishes including Baden's. The event was really fun, and we were moved how many people came up and hugged us and encouraged us. Here is the speech I gave at the event:
------------
Thank you for inviting us here tonight. It is our honour to represent the children that Make A Wish Foundation supports. My name is Joanne Klein and I am joined here tonight by my husband Fred, and my kids Alison and Baden. I recently learned that funds raised at this event last year, sponsored Baden’s wish. I would like to thank you and Make A Wish Foundation from the bottom of my heart for making this incredible kids wish come true.
For Baden, it all began when he was only 9 days old. When Baden was a baby he was very sick. He caught infection after infection after infection. It was a really stressful time. As a parent it is hard to imagine that this could happen. It never really occurred to me that my child could be seriously ill. Facing your child’s mortality head on is scary. When Baden was 3 months old he was diagnosed with Wiskott Aldridge Syndrome. In plain English, Baden could have an increased tendency to bleed caused by a reduced number of platelets, he was at risk for recurrent bacterial, viral and fungal infections, and he could have severe exema on his skin. This disease is more commonly known as the ‘bubble boy’ disease. This disease is passed from mother to son, and the son gets very sick, and it is passes from mother to daughter who carry this defective gene. I found that I had had a 50 50 chance of giving this to my children. Up till this point, I had no idea that I was a carrier of this disease and we had no family history.
When Baden began treatment it was a very difficult time. Baden is so resilient though and I can honestly tell you that his story is one of tears and triumph. Tears came when he was diagnosed. Tears came when I held him down for painful procedures and he would look at me as if to say why are you letting them do this. Tears came when he had his first of over 200 blood transfusions. Tears came when he caught PCP pneumonia and had only a 40 percent chance of surviving. Tears came while we waited desperately for a bone marrow match. Tears came when his heart stopped and the doctors were trying to revive him. Tears came when he was on life support. All of these tears were tears of fear, disbelief, shock, stress, denial and so many other exhausting emotions, too many to mention by name. Along with the tears though came the triumphs. Finding a bone marrow donor, receiving the transplant, beating infections, getting discharged from Sick Kids after 6 months in isolation. Through these triumphs I can tell you that my wishes have come true so many times. Baby steps Baden has taken and is still taking towards a better life.
I also want you tell you about my amazing little girl Alison. When I was pregnant she was so excited that a new baby was coming home. When Baden was born and she came to see him at the hospital it was love at first sight for her. She had all the enthusiasm of a 3 year old, and then Baden got sick and he was gone. Months in the hospital that she did not get to see him because siblings are not allowed in the ward and he was not allowed out of it. Months with Mom & Dad far away. Staying at Grandma & Poppas. Not really understanding but knowing in some way that your brother is very ill. This was a tough time for her. It was heartbreaking for me because I missed 2 of her birthdays, but I had to be with Baden. This wish was Baden’s wish, but Alison deserved it as well. I was just as happy for her as I was for him.
After all the stress over the last few years an amazing thing happened. One day I was at my local hospital for what felt like the millionth time when I was asked if Baden had made a wish. I said no, and within 5 minutes the child life representative was on the phone with Make A Wish Foundation. I couldn’t believe it. I was so happy that he would get this opportunity. I cried happy tears all the way home. In the weeks before the Make A Wish representatives came to our home Baden talked non stop about his wish. He seemed to have a lot of really great ideas and these ideas ranged from wanting a super hero toy to going to outer space. He was really excited and it was so great to see him have something fun to look forward to. When Make A Wish came to our home he decided he wanted to go on Mickey Mouse’s boat. Make A Wish said they could do that and he was thrilled.
On the day his wish came true, a limo pulled up outside our house to take us to the airport. We flew to Florida, and then went on a 7 day Disney cruise in the Caribbean. Make A Wish and Disney spoiled both Alison and Baden. There is no place better than Disney, the land of ‘When You Wish Upon A Star’ to make dreams come true. It was the trip of a lifetime. The kids got to go swimming, meet the Disney characters, meet the captain of the Disney Magic, go to the beach, and experience many other fun activities that would have not been possible if not for Make A Wish Foundation. For my husband and I it was a wonderful opportunity to just watch the kids be kids without the worries back home.
In my opinion, organizations like Make A Wish Foundation are an important part of child’s recovery. After going through painful procedures, and spending many months isolated from the world, having a wish like Baden’s where a child can be a kid again without all the bad stuff is just as important as medicine. This is treatment for the soul. To recover kids need hospitals and doctors but they also need to be kids. Having their family with them, getting the chance to go somewhere fun, and feel special for a day or week is a big boost for the kid. Baden came back refreshed and ready to take on the world. Thank you for that.
Baden is doing really well right now. We hope that he will live a long happy life. In reality though we know that we have to take one day at a time and just cherish the times we have. Baden recently told me that when he grows up he wants to be a super hero. I told him that he is an inspiration to so many people and that he is already a super hero.
Thank you for listening to Baden’s story. I hope that you are inspired by his incredible strength and bravery. This kid has gone through so much, and we are so proud of him. Thank you.
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Hope you like the speech. Make-A-Wish is such a great organization. It was really great to help out making other kid's wishes come true.
Well I'd better go. I'm off to Chapters to get my Harry Potter book. Yes I will be in line with all the children. I'm so excited...like a kid at Christmas!!!
TTFN,
Joanne.
Thursday, May 31, 2007 9:21 PM CDT
Hello,
Baden went to Sick Kids yesterday to have check-up appointments with the eye doctor and the lungs doctor. I was hoping that he would get discharged from both of these services and that he would only have to see immunology from now on. No such luck. The eye doctor said that his eyes were worse than last time. He has dry eye syndrome from when the GVHD effected his eyes (GVHD - Graft Versus Host Disease - the dreaded life threatening illness for bone marrow transplant patients). I guess we are lucky that it is just his eyes because GVHD can be really bad. Anyway, the doctor said that Baden's eyes probably hurt him and that things probably look blurred to him. He has to have tear gel put in his eyes twice a day (probably for the rest of his life). The trouble is that he upsets himself so much getting the drops. Tonight he threw up after he had the drops, he gets so worked up I just don't know what to do. I practically had to sit on him to get them in his eyes. I think I am going to do some sort of reward program just to try and help him get used to them. Blasted dry eye syndrome!
The respitory doctor didn't want to discharge Baden because Baden still needs his inhalers. They said they are going to test for asthma next year. The trouble is Baden has scar tissue in his lungs from when he had PCP. This may also be a life long issue.
Baden also went to the dentist last week. She said there is damage because he grinds his teeth. More importantly though he is going to have enamel problems because of his bone marrow transplant. She said his teeth are already discoloured.
Anyway, as you can see, not the greatest news lately. He is mostly healthly though and we are grateful for that. We get reminded how fragile life can be and how lucky we are all the time. I am part of an on-line SCID support group and in the last 2 weeks 2 very special little boys have died to SCID. Our hearts go out to their families. There is not logical explanation why some SCIDs live and others don't. We can't wait for the day when there is a safe cure for all of them.
Thanks for checking in and don't forget to sign the guestbook.
Joanne.
Monday, May 7, 2007 9:42 AM CDT
Hello,
Last week I had the opportunity to speak at the Canadian Immunology Society's Building Better Lives Fundraiser. It went really well, and Baden's story touched many of the people in attendance. Here is the story for those of you that are interested:
Thank you for coming tonight and for showing your support for people with immune deficiencies. My name is Joanne Klein and this is my husband Fred. The world of primary immune deficiency is emotionally, physically and financially draining. After my son was born in 2003 with a primary immune deficiency it felt like the world came crashing down and our lives changed forever.
Before I tell you about Baden, I should tell you about our daughter Alison. She was born in 2000. Like all new moms and dads we were thrilled to have a baby of our own. When she got sick we would worry, but it wasn’t the kind of worry that we are now used to with our son. Ali had a few sniffles and the chicken pox when she was one, but in all honesty I never really thought about how lucky we were that she was healthy. I guess I took it for granted. After our son was born in 2003, my outlook on the importance of our health changed. I worry so much now when either of my kids has the slightest illness. I guess that is what having a child with primary immune deficiency does to you.
In 2003 we were anxiously awaiting the arrival of our second child. My pregnancy had been okay though I had had a nagging feeling the whole time that something was wrong. I had a very emotional pregnancy, and I was very happy when on Feb 6 2003 my son Baden was born. I was relieved when the doctor said he was perfect in every way and I thought that all my pregnancy worry had been for nothing. We took Baden home, and got on with our normal lives.
When he was 9 days old he started to cough. We were worried so we took him to the after hours clinic in our area. The doctor said to keep an eye on him and if he got worse to bring him back. By the end of that week, Baden was coughing, gasping for air, and vomiting. I took him to our local hospital and he was admitted with RSV and broncilitus.
After approximately 2 weeks, Baden was feeling better from these illnesses though he was very pale, and his blood work showed that he had low platelets. The doctor thought maybe there was some underlying issue other than the RSV and broncilitus. She thought he might have leukemia so he was sent to a children’s hospital in London for further tests. After 4 days of tests Baden was sent home and we were told that there wasn’t any cancer. We were so relieved, and I still remember that wonderful feeling we had driving home to Kitchener.
About 3 days after Baden after we got home Baden started fussing again. I took him to our local hospital. They did not know what was wrong so they ordered the tests that would become familiar to us after that date. They did an X-ray to check his lungs, they did a urine test to check for a bladder infection, they did a blood test, and they did a spinal tap. When they did the spinal tap they told me that it would hurt Baden and they told me to wait in the hallway. I stood outside the door by myself and sobbed as I heard him screaming through the whole procedure. I had a helpless feeling. I wish I could have done something to take the pain away. After all the tests were done, they found the infection was in his blood. He had streptococcal pneumonia of the blood stream. Baden was admitted and spent about 2 more weeks in our local hospital.
After Baden was discharged he stayed home for exactly 7 days before he got sick again. This time he had a stomach flu. It was during this hospitalization that Baden’s paediatrician suspected that there was a problem with Baden’s immune system. She had done her residency at Sick Kids and told me that Baden reminded her of a child she had seen there. Baden seemed to have all the same symptoms. Once he had recovered from the stomach flu he was sent to Sick Kids hospital for tests. At Sick Kids we met a lot of different doctors and Baden under went many tests. Baden stayed at Sick Kids for about a week, and then he was discharged. We were told to go home and that they would call us when they got the results.
For the next 6 weeks, Baden stayed healthy. It was a wonderful time. Walks to the park with the kids, and all the other fun stuff that parents do with their children. It was also during this time that it was confirmed that Baden had a primary immune deficiency called Wiskott Aldrich Syndrome. On our first post diagnosis trip to Sick Kids we were told what Wiskott Aldrich Syndrome was. Wiskott Aldrich Syndrome is a primary immune deficiency disease involving T and B lymphocytes. In addition, the blood cells that control bleeding called platelets are affected. In plain English, Baden could have an increased tendency to bleed caused by a reduced number of platelets, he was at risk for recurrent bacterial, viral and fungal infections, and he could have severe exema on his skin. This disease is passed from mother to son, and the son gets very sick, and it is passes from mother to daughter who carry this defective gene. I found that I had had a 50 hance of giving this to my children. Up till this point, I had no idea that I was a carrier of this disease and we had no family history.
Not many years ago, maybe 25 to 30 years ago, kids with Baden’s illness would have died. It is through supporting the research the goes into primary immune deficiency that doctors can now give hope to families like ours. Thanks to this wonderful research Baden had a chance to live.
The doctors at Sick Kids told us that the only cure was a bone marrow transplant. They told us that the transplant would likely happen sometime near Baden’s 2nd birthday. We were given a mini lesson on how bone marrow works. We went home from the hospital feeling scared, confused, and shocked. Over the following month, Baden continued going to the hospital on a regular basis. The doctors were so patient, answering what must have been a million questions.
Everyday we took Baden to the lab near our home so that his platelets could be checked. I would put both kids in our double stroller and walk over. We went there so often that our 3-year-old daughter started calling it the blood store. During that month Baden was healthy but he was pale and he had little spots called petichie all over his skin from his low platelets.
In June of 2003, Baden came down with another cold. I took him back to our local hospital and he was diagnosed with pneumonia. He stayed in our local hospital for a week and despite all the medication, he did not improve, in fact he got worse. I could see the worry on the nurse’s face, and I was really scared. At the end of the first week, Baden was sent by ambulance to Sick Kids. When we first arrived he went through a lot of tests, and by the end of the day we knew that he had a deadly form of pneumonia called PCP. I didn’t think much of it to be honest. I was really worried, but as had happened every other time he was sick, I expected a couple of weeks of medicine and then we would go home. I guess I didn’t really understand how bad and how rare PCP is, and that it affects only the people with the worst immune disorders. The day after we were told Baden had PCP a doctor from immunology came to speak to us. She told us that Baden’s immune problem was severe. They did not know why it was more severe than other cases of Wiskott Aldrich Syndrome that they had seen, but it was severe. The doctor asked me if I had ever heard of the boy in the bubble. I said yes, and was stunned when they told me that was the type of illness they now knew Baden was facing. We were told Baden’s immune problem was more like a child with severe combined immune deficiency or SCID than a typical Wiskott Aldrich Syndrome patient. In order to protect him they were going to move him into the reverse isolation unit at Sick Kids. Once in that ward, he would not be allowed visitors and we would not be able to have skin-to-skin contact with him. We would have to wear masks, gowns, hats, boots and gloves just to go into his room. This was the only way to protect him from getting sick again until they could do the bone marrow transplant that we prayed would save his life. We were told that he would be at the hospital for 6 months to a year, and that we should prepare for that. It was a really stressful time.
Within the next week, Baden was moved to the isolation ward. We adjusted to all the changes around us. We closed our home and moved into the Toronto Ronald McDonald House. We brought our daughter to stay with us because since Baden had been born she had spent a lot of time at Grandmas. From a 3 year olds perspective, she was expecting a new baby to come home and to have a new playmate. What she got was a very ill sibling, and her Mom & Dad had to be away all the time. It was very hard for her as it is for all siblings of sick children.
During the first weeks in the bone marrow ward, Baden got RSV again. It was also during this time that Baden began to have serious issues with his platelets. His body was destroying platelets as quickly as it was making them. Baden’s platelet counts were typically between 2 to 10 thousand when he should have had platelets in the hundreds of thousands. Baden began to receive many blood transfusions to prevent him from having an internal bleed. While this all happened, we waited for the doctors to tell us that they had found a bone marrow match. When we got the news that our niece’s bone marrow matched we were thrilled. The doctors met with us to go through all the risks of the transplant. They said, he could die, he could be sterile, he could get Graft versus Host disease, and so on. It was overwhelming when they said all the terrible things that could happen, and then they asked us, what do you want to do? We decided to continue with the transplant as that was the only chance Baden had to live.
On the civic long weekend in 2003, Baden started the chemotherapy for his bone marrow transplant. We were optimistic that this would be a turning point for him. Within a couple of days though he was agitated, and we couldn’t do anything to sooth him. A cat scan showed that due to his low platelets Baden had had a bleed on his brain. This is one of the dreaded side effects of Wiskott Aldrich Syndrome. The doctors from neurology increased his blood transfusions but they also told us that we could lose him at any minute. Within hours of being told we could lose him, Baden’s blood pressure rose and he stopped breathing. As the code blue was called through the halls of the hospital we did not know if he would live or die. If you ask my husband or me what the worst moment of our lives was, we would both say this moment. Miraculously, thanks to the excellent care and wonderful doctors at Sick Kids, and to all those wonderful people that donate blood Baden survived. A shunt was placed in his head to relieve the pressure on his brain. He spent the following few days in the ICU and 4 days later he got the bone marrow transplant that saved his life.
In the months following the transplant we were anxious for the news that it worked. Baden was still in isolation at Sick Kids. We tried to make things as normal for him as possible. We played games, listened to music, read stories, and did all the normal activities a parent would do with their child. He was on a lot of medication, and some of the medication changed his physical appearance. About 3 months after the transplant we were told he could go home. At first we were nervous. We were excited to go home, but there is a certain sense of security at the hospital knowing that you can just push a button and someone will come. Never the less, Baden was discharged. As he left the ward the doctors and nurses clapped and cheered, and I cried.
Over the following year Baden went to clinic at least once a week. He was poked so much that his veins were scarred. And then we found what we now call his lucky vein because it works every time. He had his ups and downs with virus’, blood pressure problems, fluid on his heart, and other things, but thankfully he has come through. It has been a long long journey but we are grateful everyday that he is with us, and our heart breaks for those families that have lost a child to immune deficiency.
Now, Baden is 4 years old, and in September he will start going to germ infested junior kindergarten. Yes we are nervous, but we have a lot of hope and faith that he will continue doing well. We hope that he lives a long and happy life.
By supporting the Canadian Immunology Society’s Building Better Lives campaign you can help educate our health care providers to watch for the signs of an immune deficiency. In most cases a baby that goes to the doctor will be examined, maybe get an antibiotic, and go home. Thankfully in most cases that is it. What about the child though that continues to get sick? At what point should the doctor think that maybe some underlying issue exists? Our son was on his third infection before the doctor questioned his immune system. At that point he was sent to The Hospital for Sick Children in Toronto, and within a month it was confirmed that there was an underlying issue. Baden was lucky because his paediatrician was trained at The Hospital for Sick Children and she knew all about primary immune deficiency. Had he continued to go to our family doctor I’m not sure that the outcome would have been as good. After Baden was diagnosed with Wiskott Aldrich Syndrome our family doctor confessed to me that she had never heard of the illness. She didn’t know the symptoms, and she didn’t know the treatments.
The Building Better Lives Campaign will help spread the word to doctor’s across the county so that they can be aware of the symptoms of primary immune deficiency. For kids that have severe forms of the illness like Baden, early detection one of the key factors to recovery. If the doctors can learn of the illness and isolate the child then they are saving them from being exposed to virus’. I am part of an on-line primary immune deficiency support group. This group has members from all around the world. Recently we were asked to give a one line statement about how primary immune deficiency had effected our lives. Many people in the group spoke of early detection being the key to survival. It is so important.
The Canadian Immunology Society can also provide support to parents. Parents need somewhere to turn to for information on Primary Immune Deficiency. When Baden was diagnosed we went to the Internet for information. It was really scary, and it was only later that we found out that a lot of information there is out of date. We were starved for the correct information, and hopefully in the future parents will be able to turn to the Canadian Immunology Society for this information. They can also support families financially if there is a need. Having a sick child is a financial burden and believe me, when your kid is sick this is the last thing you need to be worrying about.
Thank you for listening to Baden’s story. I hope that you are inspired by his incredible strength and bravery. This kid has gone through so much, and we are so proud of him. Please help us to save other children like him.
Thank you.
So that was my speech. Hope you liked it. (Sorry about any spelling/grammar errors!). For more info on the Canadian Immunology Society, and to get information on how you can donate, their website is www.cisociety.com
Thanks,
Joanne
Friday, April 20, 2007 11:34 PM CDT
Hello Everyone,
Just a quick note to say hello and thank you for checking up on Baden. He is doing well though he has had a rotten cold over the past few weeks. Good news is though that now he can fight those infections and not get sick (thank you Lucy!). Baden is crazy about everything action hero right now. He really likes the Teenage Mutant Ninja Turtles. Today is my birthday, and I can't help to think back to my birthday 4 years ago. It was Easter Sunday and Baden had received his first blood transfusion the day before. I remember feeling so sad. In fact, I think I cried most of the day. It's funny really because in the scheme of things that were to come, a little blood transfusion was not really a big deal. Anyway, here we are 4 years later, and today Baden went to Grand River Hospital for a check-up and was given the thumbs up. The doctor wants to see him at Grand River Hospital in 4 months. He is going to Sick Kids in May to see the lung doctor and the eye doctor. Hopefully they will think that he is doing well.
Tonight I was standing with my neighbours talking about when we were all first mothers and the night where the baby slept through the night for the first time. When I woke up I ran into Ali's room (I didn't do this for Baden when he was a baby because the first time he slept through the night he was in the bone marrow transplant ward and I was not allowed to be with him) to make sure she was still breathing. I looked for her chest to be going up and down or I nudged her a bit to make her move. All of the neighbours were all laughing about this activity that I think most Mom's go through. The not funny part though is that with Baden I still do this. Especially when he is sick I go into his room all the time to make sure that he is still breathing. I wonder if this worry will ever go away? I have found it easier to deal with certain things since Baden has gotten better but this one I still struggle with. I have a feeling this life long journey Baden is on will be life long for all of those that love him too.
Anyway, I'd better go! Thanks again for stopping by, and don't forget to sign the guestbook.
Joanne.
Tuesday, March 27, 2007 7:35 PM CDT
Hello,
Just a quick update to say hello. Since my last update we have been to Myrtle Beach in South Carolina. It was a really nice get-a-way. Since last April we have been to New York City, Prince Edward Island, Disney Cruise and Myrtle Beach --- life is good! Now we are back home (and with no more planned holidays - boohoo!). For all the other families with kids with WAS that read this page - things do get better!!!
The weather is starting to improve. Spring is in the air! That means it is time for the Sick Kids Radiothon. Baden will be on the air this Friday. At 3pm on 97.3 Easy Rock and at 4:30 on CFRB 1010 am. Please listen if you can, and don't forget to call in with your donation if you want to help other kids get better.
Last week Baden got his Chicken Pox vaccination. Now he is completely caught up with other kids his age. I was a nervous wreck that he was having a 'live' vacine. Just a year ago Chicken Pox could have been life threatening and here we were injecting the live virus into his arm. Anyway, so far so good. He has had a bit of a runny nose since the vaccination but I am not sure if it is related to the vacine or if he has picked up a little bug. Anyway, hopefully things will be okay.
Thanks for checking in! Don't forget to sign the guestbook.
Joanne.
Thursday, February 15, 2007 8:25 PM CST
Hi Everyone!
We are back from Baden's Make-A-Wish Disney cruise, and it was amazing!!! The gals from Make-A-Wish visited us before we left and gave us our itinerary, and everything we would need for the trip. On Feb 2 a stretch limo arrived to take us to Toronto airport. We were all so excited. Once we got to Orlando we were taken to the Marriot Hotel for 1 night. The manager had left presents in the room for the kids and wine for me and Fred. The next morning we took the Disney shuttle but to the port. Once they knew we were from Make-A-Wish we were escorted on the ship without waiting in line. When we walked onto the ship, they said 'welcome to the Klein family' on the load speaker. We went to our room which had a Queen size bed and bunk beds for the kids, and then we went to the sailaway party.
The food on the ship was great. Every night we rotated restaurants between Lumiere's (French cuisine), Parrot Cay (American food), Palo's (Italian food), and Animator's Palate (steak, lobster, etc.). The restaurants are beautiful and the servers make a big fuss of the cruisers.
Every day we saw Broadway quality shows with all the Disney characters. They were amazing, and I liked Tarzan (if you know what I mean!).
We went to St. Maarten, St. Thomas, and the Disney private island Castaway Cay. The Disney island was by far the nicest port. Fred and I snorkelled with sting rays (it was neat, but a little freaky).
Since we were from Make-A-Wish, Pascal (our MAW rep on the boat) gave us things every day. He gave the kids gift certificates, and Baden got a basket of presents on his 4th birthday. We got a private tour of the bridge, and free use of most everything on the ship. The week flew by and we were really sad to leave. Apart from 1/2 day when Baden wasn't feeling well it was a perfect holiday.
Our ship got back to port at 6 am on Saturday and our flight did not leave until 10 pm so we decided to go to Magic Kingdom for the day. Make-A-Wish rented us a car for our luggage. Once in the Magic Kingdom Baden did not have to wait in any lines to see Disney characters or to go on rides because he was from Make-A-Wish. Because of this we were able to go on every ride that we wanted to. We did feel bad about cutting to the front of people that had been waiting for an hour, but they would not let us wait. We got home very early on Saturday morning and it was so cold in Canada. I haven't been able to get warm all week so I'm counting the days till the snow is gone.
Anyway, it was awesome. Thanks to Make-A-Wish for making it possible. I wish every kid could go on that cruise, it is truly magical. As a Mom it was so great to see Alison & Baden's excitement. Alison said she wished she could live on the ship forever. I cried when Baden saw Buzz Lightyear, it was such a joy after all the hard times to see him completely happy.
Thanks for visiting, and don't forget to sign the guestbook.
Joanne.
p.s. I noticed that my Canadian Blood Services commercial is back on the air. Please remember to donate blood if you can. You could be the person to save another kid like Baden. It is the greatest gift.
Wednesday, January 24, 2007 9:38 PM CST
Hello,
Just a note to say hello. Baden has a little cold right now so hopefully it won't turn into anything major. Also, he fell out of bed 2 weeks ago and broke his collarbone. This has been a little challenging because little things he has gotten used to doing on his own are now hard for him. He does seem better the last 3 days so at least that is good. This month he has started to see an occupational therapist at Kidsability in Waterloo. She his helping him deal with his issues with textures and eating. Basically she encourages him to get dirty and helps him accept that. It is going okay, but she said he may have some issues when he starts school in September. We will have to wait and see.
We are anxiously waiting Baden's Make-A-Wish trip. It is a Disney cruise to the Eastern Carribean. It will be here before we know it. Baden and Alison are so excited. The countdown is on!
Thank you for checking in on us. Please don't forget to sign the guestbook.
Joanne.
Saturday, December 30, 2006 7:38 PM CST
Happy New Year! We hope that 2007 will be a good year for everyone. 2006 has been a great year for Baden. Not one night in the hospital. Hardly any medications. In 2006 Baden and the rest of our family has also had the opportunity to do volunteer work for Sick Children's Hospital, Toronto Ronald McDonald House, Grand River Hospital and Canadian Blood Services. This volunteer work means so much to us because this is our way to give back to the places that contributed so much to Baden's recovery. Since I am mentioning volunteer work, please consider donating blood. At this time of year they have real shortages because people are busy but the need does not go away. You can be a hero for someone this new year...
Anyway, have a safe and happy new year. Be sure to check in in the weeks ahead as we do the count down to Baden's make a wish holiday.
Joanne and crew.
Friday, December 8, 2006 7:24 AM CST
Hello Everyone,
A couple of new pictures in the photo album! Check them out!
Merry Christmas!!! We hope that you all have a wonderful holiday season.
First some general comments, we are sorry to see Wiggle Greg leave the band though we know that Wiggle Sam will be great. We are sad that he left due to health issues, we know how that feels. We hope that he will feel better, and have a happy life after the Wiggles. Baden still talks about the day we met the Wiggles. Wow, it was so fun, and unforgetable.
Also, I wanted to let you know that Baden went to the eye doctor at Sick Kids and she said there is a big improvement with his dry eye syndrome. She is going to see him again in May (the same day he sees the lung specialist).
Lastly, we are so happy to tell you that as of the end of November Baden has gone a whole year without being admitted to the hospital for an over night stay. We were so happy to reach this milestone. On the last weekend of November, I was at the emergency with him because he had an ear infection but thankfully it went away with antibotics and we didn't have to stay. Another milestone was met for Baden yesterday when he received his first 'live' vaccination. He received his MMR needle at Grand River Hospital. Remember he could not have had this before because he had no T cells and he would have caught the illnesses the needle was meant to prevent. Anyway, this was a big day. His next 'live' vaccination will be in approx 3 months, and will be the chicken pox vaccination.
Thank you for checking in on Baden, and your continued support.
Joanne.
This article was in the Guelph Mercury on Tuesday December 12.
Young boy with rare disease shows resilience, good humour
GUELPH (Dec 12, 2006)
Baden Klein is going on his first vacation.
In February, the three-year-old boy, who for the first seven months
of his life lived in a
sterile bubble where he couldn't even hold hands with his parents, is
going on a Disney cruise
with his family.
Joanne Klein, Baden's mother, said she's ecstatic.
"We've had so many bad things happen that it's nice to have a nice
thing to look forward to."
Baden was born with Wiskott-Aldrich Syndrome, a rare immune
deficiency disease that makes him
more susceptible to infections and bleeding. He lived in a sterile
room for the first few
months of his life, unable to have skin-to-skin contact with anyone,
even Joanne and her
husband Fred.
During a round of chemotherapy in August 2003 to treat the disease,
he suffered bleeding in
the brain. When he went into cardiac arrest and was placed on life
support, things didn't look
good for Baden. A bone-marrow transplant from his cousin saved his
life.
Now, three years later, things are looking up. In September, Baden
had an ear infection and
the sniffles, but little sicknesses are no longer the big worries
they once were.
He still goes to Toronto's Hospital for Sick Children three times a
year for a checkup, but
his mother said she hopes to reduce the visits to twice a year.
In November, he celebrated one year without being admitted to
hospital, a milestone for a
child who spent the first 200 days of his life in a hospital bed.
Baden also started day care this year, and will start kindergarten
next year.
Klein said she's optimistic.
"I feel happy about him starting school," she said. "I think he's
ready for it. I'm happy he
can get to that place."
Klein said her son loves every minute of day care. He makes crafts,
watches television and
plays with other kids. She said day care and being around other
children have helped him.
"He's making improvements just being around other kids," she said.
One improvement is his
appetite. Baden used to get most of his food through an intravenous
tube.
Baden is just like any other three year old.
Last week, he went tobogganing for the first time. He terrorizes his
older sister and likes
taking baths -- "normal boy things," said Klein. She said Baden loves
Elvis Presley, so much
so that he dressed up as the king for Halloween.
Baden doesn't seem to let his past troubles get in his way. He wants
to be a superhero when he
grows up.
"He's totally into action heroes," his mother said. "He loves
Superman and Spiderman and the
Power Rangers. Even around the house, he's always flying around like
Superman. He wants to be
an action hero."
Right now it seems like there's nothing this Baden can't do. So
Superman, watch your back.
dmendes@guelphmercury.com
Sunday, November 5, 2006 9:04 AM CST
Hi Everyone!!!
One of Baden's wishes came true yesterday when he got to meet The Wiggles at The Rogers Centre in Toronto. Thanks so much to the people at Spin Master Toys and the Neinstein family for making this possible. When we got to the Roger's Centre we were taken back stage to meet The Wiggles before the show. Baden and Ali were so excited. We got to spend 5-10 minutes with them before the show. Baden loved Murray (red Wiggle) and was thrilled when Murray gave him his guitar pick. Alison was a little shy but she did get all their autographs for her scrapbook. The Wiggles were very nice and made such a fuss of the kids. When The Wiggles left to do the show (it was already late starting), Baden asked them to wait until he was in his seat because he didn't want to miss any of the show. The show was excellent, they came onto the stage in their big red car. It was very entertaining, and The Wiggles and all their cast get a great work out. During the show they told the audience about Baden and they brought him and Alison on the stage to give roses to Dorothy the Dinosaur. When they told Baden's story I could hear all the parents saying ahhh. As his mom I felt pretty emotional - after all the hard stuff it was so great to see him completely happy. It was a very memorable day. Thanks again to Spin Master Toys and the Neinstein family - we will never forget this!
Joanne
(p.s. in addition to the photo on this page, there are more in the photo album so check them out!)
Saturday, September 23, 2006 5:17 PM CDT
Hi Everyone,
Just a quick update to say that things are going okay right now. Baden has adjusted to his new babysitter. I have noticed that he has a bit of a cough and he has red cheeks so I am keeping my eye on him to make sure he is okay. He continues to struggle with the eye drops and I would be lying to say that somedays I feel so tired that he has to have them. I wish so much that he had never got sick.
Speaking of wishes, we are waiting to hear what his wish will be. He has made a wish to go on a Disney cruise or to go to Disneyworld so we are anxiously waiting to hear what it will be. (BTW, he also wished to go to outer space with The Wiggles but they don't think they can grant that one!). It is so nice to have something fun to look forward to.
As I type this Baden is standing with his Wiggle guitar watching television. He loves that guitar so much. When he turns 4 we are going to get him guitar lessons. We went to Niagara Falls for the weekend last weekend and we have started him on a collection of Hard Rock Cafe pins (which are mostly guitars). He is really excited about it. He wants to be a rock star when he grows up so we will see what happens! If anyone reading this ever goes to a Hard Rock anywhere please help us get Baden his guitar pins.
Thanks for checking in on Baden. Please sign the guestbook so I know you've been here.
Joanne.
Sunday, September 10, 2006 8:03 PM CDT
Hello
Thank you! Thank you! Thank you!
The kindness of people always amazes me!
To our wonderful family, friends and community, thanks for coming to Alison & Baden's lemonade stand. A special thanks to CTV for broadcasting the 6pm news live from our house.
Drum role please....
we raised $1015 for Toronto Ronald McDonald House.
Joanne.
Thursday, September 7, 2006 6:57 AM CDT
Hello Everyone!
The Kids are having their lemonade stand this weekend. Please stop by if you are in the neighbourhood!
PLEASE HELP ALISON & BADEN RAISE MONEY FOR THE RONALD MCDONALD HOUSE ‘TODDLE FOR TOTS’ BY STOPPING BY THEIR SECOND ANNUAL LEMONADE STAND
WHEN: Friday Sept 8 from 4:30 to 7:00
Saturday Sept 9 from 9:30 to 11:00
WHERE: 46 Mary St. Kitchener
What is Ronald McDonald House?
The Ronald McDonald House provides a home away from home for out of town families whose children are receiving treatment in Toronto hospitals for serious illnesses. It is a fantastic organization that has helped many children and families from our community. In 2003 Alison lived at the Ronald McDonald House in Toronto for 6 months while Baden received a life-saving bone marrow transplant at the Hospital for Sick Children.
What is Toddle for Tots?
Toddle for Tots is an annual fundraiser for the Toronto Ronald McDonald House. Kids collect pledges and then go on a fundraising safari at the Toronto Zoo. Alison and Baden are participating in this event on September 30 and are using the lemonade stand as a fundraiser.
FYI – Last year Baden was the spokesperson for this event and our whole family was interviewed on Breakfast Television.
Thank you for your support!
Love cures people – both the ones who give it and the ones who receive it.
(Dr. Karl Menninger)
Thanks,
Joanne.
Sunday, August 27, 2006 9:40 PM CDT
Hello Everyone,
Sorry it has taken me so long to update. Since we have been back from holidays things have been so busy that I have hardly had time to sit at the computer.
We had a wonderful holiday out East. We started with a couple of days in Prince Edward Island. I loved it there. It is so beautiful and relaxing. Alison and I read Anne of Green Gables before we went so we really loved all the Anne of Green Gables things to do. Check out the photo of Ali dressed like Anne in the photo album! After PEI we drove to Halifax, Nova Scotia. Baden loved Theodore the Tugboat, and we all enjoyed learning some of the history of Halifax. After Halifax we drove down the coast and then took the Digby ferry to Saint John, New Brunswick. We only stayed there 1 night before driving to Quebec City for 2 nights. My parents met us in Quebec so that was nice. We celebrated Baden's third transplant anniversary (his re-birthday) at a really nice restaurant in Quebec City. What a difference three years made! Of course, we took the time to phone Lucy and say a special thank you to her for the life she gave Baden by donating her bone marrow. Overall, the 2 weeks away was great. It went so fast and we drove so far (Alison now says she is 'allergic' to long car rides - haha), but it was awesome. Can't wait for our next vacation!
I also wanted to let everyone know that Baden is doing really well. I am putting his eye drops in (he has dry eye syndrome as a result of getting Graft versus Host Disease in his eyes). It is a struggle, but this is nothing compared to the struggles of days gone by. We are going to Sick Kids on Wednesday to see immunology. They will test his T cells to make sure his bone marrow is working properly. We are hoping that all is well and that he will be able to get his Chicken Pox vaccination soon.
In one week Baden is starting at a new daycare so hopefully he will like that. It should do him some good to be with other kids, and the dietician and occupational therapist are hoping it will help with his eating. He weighs 29.5 pounds right now and is in the 25th percentile for his age. I am sure Baden will like the new daycare but I know he will miss Kris. Thanks Kris for everything over the last year and half!
We had fun at the Scids picnic this year. It was really nice to see everyone again, though I don't think there were as many this year as last. It was nice to see Kylie again, but we were a little sad not to see Bryden (they couldn't make it to the picnic). It was also nice to offer encouragement to Parker's family. He is going to Italy soon for gene therapy, and we wish him and his family the best.
Wednesday (August 30) was 4th annual Baden Klein fundraiser at the University of Guelph with money going to families in need, and local children's families. Past money raised has gone to Ronald McDonald House and Parker DesLaurier's family. Things changed a little bit this year, but we still raised a little bit of money to help those in need. Here is the article that was in the Guelph Mercury the day after:
Baden Klein's journey leading to normalcy
DANIEL DALE
GUELPH (Aug 31, 2006)As he walks onto the Alumni Stadium field, three-year-old Baden Klein holds hands with Guelph Gryphons men's soccer team captain Nick Cairns.
To Baden's parents, this is a miracle. For the first seven months of his life he couldn't even hold hands with them.
Born with the rare Wiscott-Aldrich Syndrome -- an immune deficiency disease -- Baden lived in a sterile room at Toronto's Hospital for Sick Children from June to December 2003."If you can picture a boy in a bubble," says his father Fred, "he's in a room where only the doctors, nurses, and Joanne and I went into. You had to scrub in as if you were going into surgery. So you have to put on latex gloves, the gowns, the masks, the hat."
"No skin-to-skin contact at all," says Joanne, his mother.On Aug. 7, 2003, Baden suffered bleeding in the brain while undergoing chemotherapy. When he had cardiac arrest and was placed on life support, doctors told Fred and Joanne to say their goodbyes.
"He was very iffy for a couple of days," Joanne says. "We sat by his bedside. And then he just opened his eyes and laughed.
"Four days later Baden received bone marrow from his cousin Lucy Mason. It saved his life.
Three years later, the entire Klein family is laughing. Baden is healthy, his immune system is functional, and he only has to visit Sick Kids once every three months.
Prevented from any contact with other children until October 2004, he starts day care next week.
Appropriately clad in a "Cowchester Moonited" T-shirt his parents bought him on a Prince Edward Island vacation earlier this summer -- the first trip they have ever been able to take him on -- the blond, bubbly 30-pounder looked very much the typical child at yesterday's Baden Klein Cup.
University of Guelph men's soccer head coach Keith Mason, Baden's uncle and Lucy's father, founded the charity exhibition game in 2003 to raise money for Baden's medical care. The proceeds from this year's game will be donated to the family of another local child with health problems.
A smiling Baden could hardly contain his excitement after Cairns led him out for the game's ceremonial opening kick. Before the referee could place the ball at midfield, Baden launched it toward the far sideline.
As the Gryphons and the Ryerson University Rams played to a 1-1 draw, Baden busied himself marching in a circle, jumping off a small sideline ledge and talking ceaselessly."He's a chatterbox," says Fred. "Once he gets comfortable with you, he'll talk your ear off."
At home, Baden plays with his cousins and six-year-old sister Alison, watches The Wiggles, and sings along to the songs of the man Joanne says he wants to be: Elvis Presley.
To lift his spirits when he was isolated in the sterile Toronto room, Fred and Joanne played Baden some of the King's hits."And he just took to it like you wouldn't believe," Joanne says. "Now he knows every word to every song. It's really funny."
Of course, Fred and Joanne are still concerned about their son's future.According to their doctors, there is a 10 per cent chance that his body will reject the transplanted bone marrow at some point in his life."I worry if he gets sick, I worry about chicken pox because it would be nasty for him. I worry about every little mark or spot or anything he gets on his body," Joanne says."And in general, as a parent, I worry that something will happen to him."
Watching Baden busily ignore the soccer game named in his honour, though, it's hard for Fred and Joanne not to be content."Life is almost normal," says Joanne. "Which is, like, my favourite word. Normal."
ddale@guelphmercury.com
Tomorrow the Make-A-Wish Foundation is going to be visiting Baden. His wish has been granted but he is yet to name it (maybe tomorrow). This is such a great gift for the whole family and I can hardly believe it is happening. Wishes are granted to children who are over the age of 3 and have terminal or significant, life threatening problems. Baden probably would not have got a wish, but when he was 2 he had such a lot of problems that he still deals with on some levels. I am just grateful that wishes come true because Baden deserves it after all the suffering he has gone through. (BTW, my wish came true when Baden got better, but my bigger wish would have been for him to not get sick in the first place!). I will keep you updated and let you know what his wish is once he has chosen.
On September 30 we are going to Toddle for Tots at the Toronto Zoo. This fundraiser raises much needed funds for the Toronto Ronald McDonald House. Anyone interested in sponsering the kids, please let me know (my email address is on this page). I will probably send almost everyone I know an email invitation as well. Please help us support this great charity.
Anyway, as I close this I would like to say please sign the guestbook so that I know you have been here, and please pray for a little boy named David that I got to know when his mom emailed me one day. He lives in the States, and like Baden he has WAS. He is currently in the delicate days after his transplant, and I want positive thoughts sent his way so that he gets better soon.
Have a good day,
Joanne.
Tuesday, August 1, 2006 9:21 PM CDT
Hello Everyone!
I am writing this message from Prince Edward Island. We are having a great time! This is a really beautiful place. We went to Green Gables and Avonlea yesterday. Alison loved meeting Anne of Green Gables and all her friends. It is a really neat attraction for kids. Today we went to Point Prim lighthouse and to the beach. It is very laid back and relaxing here, exactly what we needed. Tomorrow we are heading for Halifax.
Thanks for checking on Baden. Know that right now he is as happy as can be and having a wonderful time on his holiday!
Don't forget to sign the guestbook.
Joanne.
Wednesday, June 7, 2006 7:59 PM CDT
Hi Everyone,
Baden went to Sick Kids last week for 3 appointments. You will see the new photo on this page is with the eye doctor. Baden has some damage in his eyes from when he had Graft versus Host Disease after transplant. The damage is minimal. He does not need glasses but he does have dry eye. Check out the picture of our 'hulk' Baden in the photo album! We have to start putting tear gel in his eyes 4 times a day. Now I should tell you that Baden hates eye drops, and the tear gel is very thick. It is not going to be easy, but we will do what we have to do. In a lot of ways it was easier to give Baden medication when he was a baby. We have to go back to the eye doctor in 6 months.
The chest doctor was happy to hear that Baden has not needed his 2 inhalers. He wants to see Baden in 1 year unless something comes up. I guess he wants to see Baden get through a winter on his own without needing inhalers. The scars in his lungs have made Baden prone to infections in the past so hopefully the winter of 2006-7 will be Baden's first healthy one.
The heart doctor ordered an echocardiogram, and and ECG. I am happy to tell you that the results were finally normal. Baden has been discharged from cardiology for good!
Baden is going to our local hospital on Friday. He is scheduled to have his menjugate vacination. After that we are waiting till August to see if his T cells and chimerism results are good. If those are good he will get the chicken pox vacination. We just have to avoid chicken pox until then.
I would like to thank everyone that checks up on Baden from time to time. It is nice to know that even though he is doing way better you haven't forgotten his struggles. Please sign the guestbook before you leave.
Joanne.
Tuesday, May 2, 2006 8:59 PM CDT
Hello Friends!
We are home from our mini break to New York City. This was Baden's first ever vacation. We went to The Statue of Liberty, Ellis Island, Times Square, Yankee Stadium, and Central Park (to name a few). Alison and Baden really liked the Toys 'R' Us at Times Square. It took us just over 8 hours to drive to New York City. The kids were really good. They loved sleeping in the hotel, and they liked having a pool at our disposal. Baden did get a little cold while we were there but he has successfully faught it off. I have to confess that I was a little relieved to cross the border on Sunday and get back to Canada and OHIP coverage. Getting sick in the U.S.A. would be too expensive. I know parents of sick children in Canada know what I mean. I really feel for all the families of the sick kids in the U.S.A.
Check out the new photos in the photo album.
Thanks for checking in.
Joanne.
Thursday, April 6, 2006 9:35 AM CDT
THIS IS THE STORY ABOUT BADEN IN TODAYS TORONTO STAR:
Little ones defied long odds
Tots teetered on brink of death
for many months
Now these kids thrive in the
tight embrace of grateful families
Apr. 6, 2006. 01:00 AM
ELVIRA CORDILEONE
STAFF REPORTER
The reason one child succumbs to a deadly disease
while another pushes through can be as mysterious as life itself.
But the families of Baden Klein, 3, and Gabrielle Taylor, 2, don't brood over such philosophical questions. It's enough for them that their children live, that they feed themselves using their own hands instead of getting nourishment from a feeding tube, that they grow, that they talk and walk and laugh — and even get into mischief.
What does it matter to Joanne and Fred Klein why Baden survived after doctors shook their heads as they wheeled him into the operating room to stop bleeding in his brain? That shattering moment is safely in the past and, last December, Baden spent Christmas with the family for the first time.
Now that he's strong enough to have started swimming lessons, what does it matter that the chemotherapy treatments and succession of aggressive infections might have killed him?
Gabi's paternal grandmother, Heather Taylor, has no time for such questions. She's too busy celebrating Gabi's life, especially so since a kindly emergency room nurse, certain the infant would die, gave her a tuft of the child's hair as a keepsake.
After spending the first 15 months of her life in a hospital bed, Gabi's relieved parents, Trish Tarbush and Jason Taylor, bask in the happiness their sweet-natured first-born child brings them.
Both children survived benevolent torture at the hands of Sick Kids caregivers bent on saving their lives. Teetering on the brink of death for many months, they defied the odds to thrive in the tight embrace of grateful families.
Baden, apple-cheeked and exuberant, was born with Wiscott Aldrich Syndrome, an inherited disease that left him without an immune system and unable to fight infections.
In August 2003, only days before a scheduled bone marrow transplant, the then-6-month-old boy from Kitchener was rushed into surgery to put a shunt in his brain to stop the bleeding.
During the months Baden spent in and out of hospital, much of it in an isolation ward to keep infections at bay, he endured seizures, heart stoppages, deadly infections that have permanently scarred his lungs, hundreds of blood transfusions, countless painful tests and thousands of needles.
Gratefully, Joanne Klein reports he hasn't needed a blood transfusion for almost a year and has stopped taking anti-rejection drugs prescribed after his bone marrow transplant.
"His immune system is good. It functions normally now," Klein says. "The whole mood is more relaxed, normal — normal, the most wonderful word."
She notes with delight that he's become quite a chatterbox. He not only likes to talk, she says he converses using full sentences — and charms everybody.
Gabi was only four days old when her life veered out of control. Born on Feb. 5, 2004, her grandmother Taylor, who was helping the young Pickering couple, became worried when she noticed the back of her head had a purple tinge and was horrified when she saw blood stains on the blanket where her head had rested.
They rushed her to a Scarborough hospital emergency room. From there, she was taken to The Hospital for Sick Children by police escort, where she spent the next 15 months.
Doctors soon halted the infection, which can kill in 12 to 24 hours, but it had already consumed three-quarters of Gabi's scalp and two-thirds of her small intestine. On Feb. 17, she had the first of four surgeries to repair her perforated bowel, and many painful skin grafts for her damaged scalp followed.
"We wouldn't be here today if it wasn't for our family and the family we made while she was at the hospital," says Trish Tarbush, who spent 10 days in nearby Mount Sinai hospital recovering from the same infection soon after her daughter was admitted to Sick Kids.
That Gabi endured pain so acute she needed a team of specialists to manage it doesn't show in her large china-blue eyes or smooth porcelain skin.
"She sings all day long," says her maternal grandmother, Bunty Tarbush.
Gabi takes two pills a day, down from a high of 22 that included opiates. One pill reduces the itchiness of the skin graft covering the back of her head and the other helps the 40 per cent that's left of her gut to function better.
Tarbush says even though her daughter eats just about everything, her shorter intestinal tract means she doesn't absorb all the nutrients food delivers. To help with hydration and growth, Gabi is hooked up to a feeding tube while she sleeps.
"She'll always have some sort of food issues," Tarbush says. "But she's happy and that's all that matters."
The children lag behind in some areas of their development. But they're catching up with the help of occupational therapists, physiotherapists and dieticians, among other specialists.
"Since Baden was 9 months old, he had not been within the acceptable height and weight for his age group," Klein says. "In the fall of 2005, Baden finally hit the bottom of the percentile chart again, and he is still growing."
And grandmother Tarbush predicts Gabi will be tall and slender, like her dad.
Thursday, April 6, 2006 9:35 AM CDT
THIS IS THE STORY ABOUT BADEN IN TODAYS TORONTO STAR:
Little ones defied long odds
Tots teetered on brink of death
for many months
Now these kids thrive in the
tight embrace of grateful families
Apr. 6, 2006. 01:00 AM
ELVIRA CORDILEONE
STAFF REPORTER
The reason one child succumbs to a deadly disease
while another pushes through can be as mysterious as life itself.
But the families of Baden Klein, 3, and Gabrielle Taylor, 2, don't brood over such philosophical questions. It's enough for them that their children live, that they feed themselves using their own hands instead of getting nourishment from a feeding tube, that they grow, that they talk and walk and laugh — and even get into mischief.
What does it matter to Joanne and Fred Klein why Baden survived after doctors shook their heads as they wheeled him into the operating room to stop bleeding in his brain? That shattering moment is safely in the past and, last December, Baden spent Christmas with the family for the first time.
Now that he's strong enough to have started swimming lessons, what does it matter that the chemotherapy treatments and succession of aggressive infections might have killed him?
Gabi's paternal grandmother, Heather Taylor, has no time for such questions. She's too busy celebrating Gabi's life, especially so since a kindly emergency room nurse, certain the infant would die, gave her a tuft of the child's hair as a keepsake.
After spending the first 15 months of her life in a hospital bed, Gabi's relieved parents, Trish Tarbush and Jason Taylor, bask in the happiness their sweet-natured first-born child brings them.
Both children survived benevolent torture at the hands of Sick Kids caregivers bent on saving their lives. Teetering on the brink of death for many months, they defied the odds to thrive in the tight embrace of grateful families.
Baden, apple-cheeked and exuberant, was born with Wiscott Aldrich Syndrome, an inherited disease that left him without an immune system and unable to fight infections.
In August 2003, only days before a scheduled bone marrow transplant, the then-6-month-old boy from Kitchener was rushed into surgery to put a shunt in his brain to stop the bleeding.
During the months Baden spent in and out of hospital, much of it in an isolation ward to keep infections at bay, he endured seizures, heart stoppages, deadly infections that have permanently scarred his lungs, hundreds of blood transfusions, countless painful tests and thousands of needles.
Gratefully, Joanne Klein reports he hasn't needed a blood transfusion for almost a year and has stopped taking anti-rejection drugs prescribed after his bone marrow transplant.
"His immune system is good. It functions normally now," Klein says. "The whole mood is more relaxed, normal — normal, the most wonderful word."
She notes with delight that he's become quite a chatterbox. He not only likes to talk, she says he converses using full sentences — and charms everybody.
Gabi was only four days old when her life veered out of control. Born on Feb. 5, 2004, her grandmother Taylor, who was helping the young Pickering couple, became worried when she noticed the back of her head had a purple tinge and was horrified when she saw blood stains on the blanket where her head had rested.
They rushed her to a Scarborough hospital emergency room. From there, she was taken to The Hospital for Sick Children by police escort, where she spent the next 15 months.
Doctors soon halted the infection, which can kill in 12 to 24 hours, but it had already consumed three-quarters of Gabi's scalp and two-thirds of her small intestine. On Feb. 17, she had the first of four surgeries to repair her perforated bowel, and many painful skin grafts for her damaged scalp followed.
"We wouldn't be here today if it wasn't for our family and the family we made while she was at the hospital," says Trish Tarbush, who spent 10 days in nearby Mount Sinai hospital recovering from the same infection soon after her daughter was admitted to Sick Kids.
That Gabi endured pain so acute she needed a team of specialists to manage it doesn't show in her large china-blue eyes or smooth porcelain skin.
"She sings all day long," says her maternal grandmother, Bunty Tarbush.
Gabi takes two pills a day, down from a high of 22 that included opiates. One pill reduces the itchiness of the skin graft covering the back of her head and the other helps the 40 per cent that's left of her gut to function better.
Tarbush says even though her daughter eats just about everything, her shorter intestinal tract means she doesn't absorb all the nutrients food delivers. To help with hydration and growth, Gabi is hooked up to a feeding tube while she sleeps.
"She'll always have some sort of food issues," Tarbush says. "But she's happy and that's all that matters."
The children lag behind in some areas of their development. But they're catching up with the help of occupational therapists, physiotherapists and dieticians, among other specialists.
"Since Baden was 9 months old, he had not been within the acceptable height and weight for his age group," Klein says. "In the fall of 2005, Baden finally hit the bottom of the percentile chart again, and he is still growing."
And grandmother Tarbush predicts Gabi will be tall and slender, like her dad.
Friday, March 31, 2006 12:01 AM CST
Hello,
A follow-up article about Baden will be in the Toronto Star on Thursday April 6 for those interested.
I wanted to remind everyone to listen for me and Fred on Wednesday April 5 on the Sick Kids radiothon. I will be on CFRB (1010 am) at 11:10 am, Easy Rock (97.3 fm) at 12:00, and the Mix 99.9 (am) at 12:30. I was on the radiothon last year, and it was really fun. It is also really nice to give something back to the hospital that gave us Baden back.
The kids are doing well. Baden had a visit from his community dietician and occupational therapist this morning. They are still working with us on his eating issues. We are going to reduce his pediasure by 2 ounces per bottle. Hopefully we can get him off it soon, and then maybe he will have an appetite to eat.
For those of you that are interested, there will be a documentary about David Vetter on the television show American Experience Monday April 10 at 9pm (EST). This show is on PBS. David Vetter was the original boy in the bubble, and the documentary is the story of his brave life. NASA even made him a $50000 space suit so that he could go out into the world. Sadly he died at the age of 12. He was born at a time when the treatments for SCID were not as advanced as they are today. Please watch this show if you can. So many television shows / movies poke fun at the boy in the bubble, and it is really no laughing matter. I can't understand why people make fun of it. The illness is very serious, and it is as life threatening as many other illnesses, but you don't see television shows / movies poking fun at people with cancer, and other life threatening illnesses. Maybe I don't have a sense of humour, but I do not think it is funny.
Anyway, have a good day!
Joanne.
Tuesday, March 21, 2006 7:10 AM CST
Hello,
Listen for me on Wednesday April 5 on the Sick Kids radiothon. I will be on CFRB (1010 am) at 11:10 am, Easy Rock (97.3 fm) at 12:00, and the Mix 99.9 (am) at 12:30.
Check out the new photos in the photo album!
I know I haven't updated for a while. Sorry about that! Many thanks to those that have signed the guestbook, it means a lot.
Baden went to Sick Kids on March 9 for an appointment with nephrology (that is the kidney and blood pressure doctor). He had an ultrasound scheduled for 8am so I was told to get there at 7:30. We left home at 5:45 and got there at 8:00. When we got there we found up that the hospital had made a mistake and that even though the appointment card they mailed me said March 9, the ultrasound was in the computer for March 30. I was not very happy so they moved mountains to do Baden's ultrasound. After the ultrasound he had an echocardiogram, and then he was supposed to see the doctor at noon. We got to the doctors office at noon and she didn't see him until 2:45. Needless to say, it was a long day. The good news though is that the muscle around his heart is now a normal thickness for his age (it had previously been too thick thanks to the drugs he used to be on), and his kidneys are growing at the right rate for his age group. Dr. Harvey said that from her perspective she didn't think that he needed another follow-up appointment with nephrology unless something comes up in the future. So yippee, one less doctor to see. Fred and I are really pleased with this news. Baden is doing really well though he has had a stomach flu in the last week (I'm sure he picked it up at the hospital!), and he continues to have eating issues.
We took Baden to Sick Kids on Thursday for a follow-up photo shoot for the Toronto Star. I think that they got some really good photos of him. The follow-up article and photo will be in the Toronto Star the first Thursday of April.
Anyway, thanks for checking in, and don't forget to sign the guestbook.
Joanne.
Tuesday, February 21, 2006 11:58 AM CST
Hello
Sorry I haven't updated for a while. We are having computer issues at home. Anyway, I thought I would update so that those of you that are committed followers of Baden's story will stop nagging me! (you know who you are - ha ha)
Baden is doing okay. The dietician and Occupational Therapist visited the home today and he has gained weight. He is also within the percentile chart for his age. We are still dealing with some bahavioral issues but I guess those things will take time. Apparently our local dietician and Occupational Therapist do not agree with Sick Kids Hospital's decision to cancel Baden's appointment with the eating specialist. From our point of view we will just keep trying the best we can to make him eat. Baden is still getting his nutrition from pediasure.
Baden went to Sick Kids a few weeks ago. The doctors were really happy with him and immunology does not want to see him for 6 months! We still have to go to see nephrology, lungs, cardiology, and eye doctors so we will still be making the trek up the 401 at least monthly for now.
Alison and Baden have both had the stomach flu over the last week. So far it has been manageable and Baden has not had to see a doctor. In fact, this is the first illness he has had that I haven't called Sick Kids so that feels really good. Fred had a really bad cold a couple of weeks ago, and I have had a cough for a while. I keep thinking that it will develop into something, but so far so good.
Baden went to see Dr. Rosner (his local pediatrician) on Valentine's Day. She was really happy with him though she did prescribe him an antibotic because he had fluid in one of his ears. He is going to see her in a couple of weeks to get the prevnar vaccination. He had this previously, but the bone marrow transplant (and specifically the chemotherapy) erased it from his system. Hopefully this needle will go well. Last time he had a needle he ended up in the hospital for 4 days because the nurse put it in the fatty tissue not the muscle, and it got infected. Dr. Rosner told me that she suspects she might have another SCID baby as a patient. She is referring the family to Sick Kids. I hope she is wrong, but if the baby is a SCID, then Sick Kids is the best place.
The tv commercial that Baden and I filmed for Canadian Blood Services has been getting a lot of air time. I have seen it every day while I have been watching the Olympics. I got an email from Canadian Blood Services and they said that the initial reaction to the commercial has been good, and that their call centre is receiving quite a few calls from potential first time donors. This makes me feel so proud. I am really excited about how it has turned out.
I have recorded a thing for the Sick Kids Radiothon that runs from April 5 to 7 on many Toronto radio stations (i.e. Mix 99.9). They are going to put it to music so it should be really good. I had to go down to the radio station to it should be a good recording. Hopefully Sick Kids will get some new donors. There is also going to be a follow up story to last years article about Baden in the Toronto Star on April 6. I haven't talked to the paper about this yet.
Anyway, as you can see everything is busy! Thanks for checking in, and don't forget to sign the guestbook.
Thanks,
Joanne
Monday, February 6, 2006 7:16 AM CST
Hi
Today is Baden's third birthday. It means so much to us this third birthday. When Baden was born and the doctor told us what his illness was we looked on the internet and found out that his life expectancy was 2. This is not the case for all Wiskott's, but Baden had the severest form of the disease. Now he is three, and as for his life expectancy, well hopefully the sky is the limit! This is a pretty big milestone for him.
Last week a lady whose son also has Wiskott Aldridge Syndrome signed Baden's guestbook. Sadly her 5 year old baby died on the weekend. As we celebrate Baden's birthday tonight we will remember the families that are not as lucky as we are. The lesson in little Elisha's death is to live each day to the fullest. Love your kids and spend quality time with them. I know that when my kids grow up and leave for university or to get married, I hope that they will be able to say that they had a fun, and that their childhood was the greatest!
Thanks for checking in, and don't forget to sign the guestbook.
Joanne.
Monday, January 30, 2006 10:34 AM CST
Hi Everyone!
Just wanted to give a quick update on Baden. He has a cold and is losing his voice. We are watching him very closely and hope that this will pass quickly. He has to go to Sick Kids soon for a check up so I will be glad when that is done. (By the way, Alison is also sick).
I also wanted to let everyone know that the television commercials that I did for Canadian Blood Services begin airing today. There are 3 different commercials and they will be on CBC, Global, MuchMusic, Bravo, W Network, CH, and many other channels right across Canada for the next 2 months. I am so proud of the commercials. Baden had over 200 blood transfusions when he was at Sick Kids. Baden hasn't needed a transfusion for a while but the need is so great that there was no way I could say no when they called me. I guess that now I do it for kids fighting serious illnesses like Ethan, and Christopher, kids that need blood as a result of an accident like my niece Emily did last year and brave adults like Danielle that would not be able to live without it. I really want these commercials to make a BIG difference. I guess time will tell. I'm not sure if these links will work, but these are the links to the commercials if you want to see them. (You may have to copy and paste them into the address line).
http://206.191.60.86/Streaming/cbs-television-spot-2006-30.wmv
http://206.191.60.86/Streaming/cbs-television-spot-2006-60.wmv
http://206.191.60.86/Streaming/cbs-television-spot-2006-120.wmv
You can also go to the link on the Canadian Blood Services website at www.blood.ca
Anyway, that is it for now. Thanks for checking in, and don't forget to sign the guestbook.
Joanne.
Wednesday, January 11, 2006 11:00 AM CST
Hello,
Well today is a new day for Baden. This morning, for the first time since he was 4 months old he didn't have to take any oral medications. This is a big milestone for him, and I am of course thrilled. I'm also a little nervous about the last medication being removed since that is the medicine that prevents the dreaded PCP. All I can do is trust that everything will be okay. I know that as time goes by I will relax about it though I have to confess that I had very little sleep last night worrying about it. I guess the worry comes with having Baden. Baden is still using an inhaler, and he has a cream and eye drops that he needs daily.
The other new thing is that we are again helping Canadian Blood Services to get the message out. I filmed a tv commercial for them on Sunday. They are not sure yet what the commercial will be or whether Baden's story will be on it at all but they will be using him in some way to get the message out. Baden received over 200 blood transfusions from hundreds of donors. We are honoured to help them in any way we can.
Baden and Ali had a great Christmas. Lots of great presents. Baden does have a cold right now so I am a little worried about him due to the scars in his lungs. We are just taking it day by day. I know that families that have been in our position know, this is not an easy road to travel.
Thanks for checking in, and please sign the guestbook.
Joanne.
Saturday, December 31, 2005 5:35 PM CST
Hello,
I would just like to wish everyone a Happy New Year! Thanks for all of your support in 2005. We are hoping for no overnight hospital stays in 2006, here's hoping our new year wish comes true!
Love always,
Joanne.
Thursday, December 22, 2005 10:03 AM CST
Hello,
Merry Christmas to all!
We have had a busy few weeks.
Sick Kids asked us to go to Swiss Chalet for Miracle Day. A dollar from every festive special sold that day went to the Miracle Network that supports Sick Kids Hospital. We had a really good lunch, and Baden got his photo in our local newspaper.
Sick Kids also invited us on the Santa flight to the North Pole. We took off from Toronto airport on an Air Transat plane. After we had flown for 20 minutes the pilot told us that we were over the North Pole. Santa then landed his sleigh on the plane. The kids loved it. Alison saw where Santa takes off in his sleigh at the North Pole from the airplane window! It was a really fun event.
Yesterday Baden went to Sick Kids. The eye doctor has prescribed him some eye drops. She said his eyes are dry likely from the Graft Versus Host Disease that he had after his transplant. We are going to see her again in 4 months. The lung doctor wants to see Baden again in 2 months. He said that Baden might be prone to lung infections his whole life due to the scar tissue in his lungs from when he had PCP. The immunologist was very happy with Baden. We are going to see them again in February. So basically all is good with Baden and we get a 6 week break before we have to go to Sick Kids again! Thanks to my Mom for going to the hospital with me. It really makes things way better when you have a helper. We had a good day, and I really enjoyed spending the time with my Mom.
Anyway, I'd better go! Have a wonderful Christmas everyone, and remember to say an extra prayer on Christmas for the families at Sick Kids Hospital.
Lots of love,
Jo.
Thursday, December 1, 2005 8:10 AM CST
Hello,
Baden continues to do well. Baden is the featured child on the Sick Kids website for December. Go to www.sickkidsfoundation.ca. You will see a photo of Baden and will be able to click on the link that tells part of his story. We are so proud of him. Hope that you all enjoy it!
Joanne.
Monday, November 28, 2005 7:44 AM CST
Hello,
Baden is home from the hospital. The doctor said that what happened was from the needle he had last week, plus he had some kind of 'funky' infection. All of the cultures were good so we do not know where the infection was. He is on an antibotic for the next week. The doctor is also going to monitor Baden's blood work. In particular, his liver enzymes ALT and AST were elevated. This can be a sign of the dreaded transplant illness graft versus host disease (gvhd). I'm not too worried because this has happened before, and the numbers went down on their own.
When the doctor asked Baden if he wanted to go home he said no. He loves it at the hospital. He has all the nurses wrapped around his little finger. Plus they have all sorts of cool toys that we don't have at home. The hospital even gave him a Barney quilt that someone had donated. He was so thrilled. I was pretty happy too as the quilt is really nice.
Anyway, I don't have anything else to say. I will update again closer to Christmas. We have to go to Sick Kids on December 21.
Thanks for checking in, and don't forget to sign the guestbook.
Joanne.
Saturday, November 26, 2005 7:45 PM CST
Hi
I just got back from the hospital. This will be a short entry as I'm really tired. I stayed at the hospital with Baden last night. They had to do bloodwork at midnight! I was not too pleased with that. When the nurse came in to do it at 7 this morning I told her to come back at 9. There is no way I was going to let her wake him up. He was exhausted. How is he ever going to get better if they don't let him sleep?
Anyway, Baden is better today. Doctor said that if all goes well Baden may go home tomorrow. I'm keeping my fingers crossed because I do not want to be at the hospital anymore.
I will try and update again tomorrow.
Joanne.
Thursday, November 24, 2005 9:56 PM CST
Hi: A quick update Friday morning...the swelling has gone down on Baden's arm. He still had a fever this morning and needed tylenol. He had another X-Ray this am and so far the doctor has not been able to say exactly what has caused this. If the fever goes away and stays away Baden may be able to go home within 24-48 hours. Thanks for checking in. Joanne.
p.s. Fred is off work today, and Baden is driving Fred mad with non stop Barney videos at the hospital --ha,ha Fred, I love it!
Hello
I can't believe how quickly things have changed since yesterday. Today on the first winter storm of the year Baden has been admitted to the hospital. He woke up early this morning and said his arm hurt. He did have a needle yesterday at Sick Kids so they said it might hurt a bit. By noon he had a temperature of 38, and it was 38.9 by 4:30. I phoned the doctors at Sick Kids and they asked me to take him to my local hospital. We live across the street from the hospital so we walked over in the snow storm. Baden was really covered in his stroller.
When we got to the hospital Baden temperature was 39.9. He was really grumbly and upset. They told me almost right away that he would be admitted and that they would be doing some tests. They started the IV and did blood cultures. When they put the turnkey on his arm he got little bruises everywhere near where they were doing it. I was so upset because I hadn't seen this reaction since before his transplant. My mind was racing (stress!) and I cried like a baby. Sometimes you just wish he could be healthy, that he wouldn't have to be a pin cushion anymore. We won't get all his bloodwork results for a few days, but his white cells were high which could mean he is fighting something.
Next he went for an X-Ray. They made him sit in the cruelest invention ever made called the pig-o-stat. I cringed when I saw it in the room. Basically they sit him on what looks like a bike seat, pull his arms up, and close this hard plastic thing around him so that he can't move. He screamed through the whole thing (which brought more tears for Mom). The doctor said the X-Ray results were abnormal, and he asked if I knew if Baden always had spots all over his lungs. I said I didn't know, but Baden is followed by a lung specialist, and he has had PCP twice so there is likely some scar tissue in his lungs. The doctor just said he wanted to talk to Sick Kids about it, and I never saw him again before I left so I couldn't ask.
Next, they put a cathetar on his penis to get a urine sample. They are testing for a possible bladder infection. We should know within two days.
Then, they admitted him to his room (room 55 at Grand River Hospital). His fever dropped a bit so I was really happy. Thank God the hospital had a bunch of Barney videos because that was the only thing that made him happy.
When I left to come home, he was complaining of an 'ouchy' arm, and upset that I was leaving. Fred is staying at the hospital tonight, and he will be with Baden tomorrow. I am really hopeful that this is a result of the needle he had, and nothing more. If his fever drops the nurse said Baden might only be in for a couple of days. Please everyone pray for this! We want our baby home!
Anyway, I am exhausted, and going to bed. I will update with more information as soon as I know it.
Love, Jo. xoxo
p.s. I found out today that the hospital gives complementary phones to children in the oncology program so we have a phone in Baden's room if anyone wants to call.
Wednesday, November 23, 2005 8:30 PM CST
Hello,
Baden went to Sick Kids today. He saw Dr. Roifman from immunology. He had blood work and a needle. The doctor was happy that he had gained weight (even though he still doesn't eat much, I think it is all the calories in the pediasure), and he grew 1 cm. Dr. Roifman was not concerned about the rash on Baden's face. He didn't think it was GVHD. I'm happy that everything went well. Fred took the day off to take Baden to the hospital and I think those boys enjoyed having a day together. Baden does not have to see immunology until February! It is the longest he will go without seeing them. He is going to Sick Kids in December though to see the lung specialist and the eye doctor.
Baden is going to be featured on the Sick Kids website as their poster child for the month of December. I will let you all know when it is posted. The hospital features one child a month and we are proud that they chose our Baden.
Alison, Kristin and I had the flu shot tonight. Ali hates needles so I had to hold her down pretty tightly. At least it is done for this year!
I'm glad to say my aunt is doing a little better. She is still in the hospital and may have a bit of a tough road ahead but she is hanging in there. It is such a relief to my whole family.
Sadly, Fred's Uncle died last week. We went to Newmarket for the visitation and funeral. Fred did a reading at the funeral. It was a nice ceremony, but really sad that it had happened. Only 10 days from his diagnosis to his death. The lesson here is to live life to the fullest and cherish those around you everyday. Ome Henk was a great man. He always had the biggest smile. He will be missed.
Thanks for checking in!
Joanne.
Monday, November 7, 2005 6:30 PM CST
Hi Baden Fans!
Don't forget to check out the new photos in the photo album! Everyone kept telling me that the photos are out of date so here you go...
Sorry I haven't updated for a while. Baden is doing well. He continues to have a rash on his face so we will have to follow up on it next time we go to Sick Kids. Baden had the first half of his flu shot today so we are preparing for flu and cold season.
We had a really nice halloween. I tried to scan some photos but am having technical difficulties. Alison was a 1920's flapper girl and Baden was a pumpkin. The kids had fun, and I can't wait until all the candy is gone (hopefully not to my waist!).
From a family perspective, Fred and I each have an aunt and a uncle that are really sick right now. I heard today that my aunt is doing better though she is still not out of the woods. Fred's uncle is not doing so good and will die soon. Both of them are young and it is heartbreaking to think of what they are going through. I pray that we can all get through this time, and I hope that you will pray for them as well. Health is a gift more important than all the money in the world, never take it for granted.
Baden is off to Sick Kids on November 23. I will update again at that time.
Joanne.
Friday, October 14, 2005 4:32 PM CDT
Hello Everyone!
Hope you all had a wonderful Thanksgiving! We had a great turkey dinner at Fred's parents house. Now I can't wait for the turkey at Christmas at my Mom & Dad's house (hint hint Mom and Dad!). Mom and Dad are in England right now so if you are reading this from England we miss you and can't wait to see you when you get back. We hope that you are having a good time and we wish we were there...boing boing!
Baden and I just got back from Sick Kids. Today was good news all around.
1. Baden did not gain weight but he has reached the bottom line (percentile) for his age. He hasn't reached this line since he was 8 months old. The dietician was thrilled!
2. Baden's chimerism result from 4 weeks ago was >90 hich is the best result that you can get (that means the new bone marrow is working!).
3. Baden does not have to go to Sick Kids for another 6 weeks! That is the longest break he has had since he was born. Hopefully he will stay healthy and it will happen. When he goes in six weeks he no longer has to go the SCID's clinic, he will go to the regular immunology clinic with all the other kids (no more isolation!).
4. The Sick Kids Foundation annual report is out and Baden's photo is on the last page. We are so proud of him.
5. Canadian Blood Services are going to send out a mail piece about Baden "Before and After." Again we are the proudest!
Anyway, that is it for now. As Baden starts to get better and get back to a normal life, please do not forget all the other kiddies that need our prayers. Special prayers going out now to Christopher, Ethan, and Emma.
Thanks for checking in!
Joanne.
Wednesday, September 28, 2005 10:04 PM CDT
Hello,
Sorry it has been a while. This is what has happened since I last updated...
We went to Ronald MacDonald House and were interviewed by City TV for the Toddle for Tots event. The interview went really well and Baden was hamming it up for the cameras.
After we went to RMH I filmed a public service speech in Toronto for Canadian Blood Services to try and get people to donate blood and platelets. It will be aired on Rogers television across Canada, and will be used at an event in Ottawa. I'm really looking forward to seeing it. They are going to send me a copy. (I hope I don't look daft!).
Two days after that I woke up and my eyes were sealed shut. Turns out I had an infection that lasted 2 days. I have a little cough but the doctor says it is past the contagious phase so I am happy about that. I can't wait till I'm back to normal (whatever 'normal' is (ha ha)).
On Saturday we went to Toddle for Tots at Toronto Zoo. The kids raised over $2000.00 for Ronald MacDonald House. Thanks to everyone that donated, and especially to Pat and Phil and Melvi for all your wonderful support. The kids loved the zoo and they loved Robert Munsch. We were interviewed by City TV at the zoo and were on tv again that night. (We seem to be turning into media stars!). It was really nice to see the Fretz family at the zoo. Their adorable baby has Wiskott Aldridge Syndrome, and will be having a bone marrow transplant soon. Everyone send your prayers their way...
By the way, Baden has been very well except for a rash that appeared on his belly. We took him to the local hospital and they think it is an allergic reaction to one of his medicines. They have started him on something else instead. Baden had his very first swimming lesson tonight. The doctors finally gave him permission to go in a public pool. Before he had only been in my sister's pool and he didn't like it too much. I was a little concerned how he would react to the pool but he loved it! The kids were all jumping up and down saying 'boing boing.' Baden of course was saying 'boing boing baggies baggies.' The kids get to go in warm water so it is a really pleasant swimming experience. I have to admit feeling very proud of him and grateful to God for getting him past another milestone. I can hardly wait for next week (I get to go in with him, and I love it just as much!).
Alison is doing really well at school. She has also started swimming lessons. She is also taking ballet. It is really cute watching her dance out of the class each week. She is going to be getting skating lessons soon as well so she is going to have a busy few months. She had to get her booster needles today and was not too pleased. She was pretty good though. I find live vaccinations amazing...how anyone ever thought of that I will never understand...
Well, I guess that is it for now. I will update again soon, and post some new photos.
TTFN,
Joanne.
Sunday, September 18, 2005 8:59 AM CDT
Hi Everyone,
Baden went to Sick Kids on Friday. He has a double ear infection, and he lost weight but the doctors did not seem too concerned. They did a chimerism test to test if the bone marrow is still working. We will know the results in a month. The doctors have stopped his steroids (Yahoo!), and the penicillin that he has been on for 2 years.
Just wanted to remind anyone interested that we will be on Breakfast Television (City TV) tomorrow. All I know is that we will be on sometime between 7:20 and 9:00 am. We are doing this to help the Toronto Ronald McDonald House. Anyone interested in sponsoring Baden for the Ronald McDonald House Toddle for Tots go to the RMH webpage at www.rmhtoronto.org and follow the links to Toddle. If you click on Baden's photo you can do a pledge electronically with your credit card. Pledges can be made up to Friday of this week. Thank you.
I'm sorry for the short update, I will update again soon.
Joanne.
Sunday, September 11, 2005 2:13 PM CDT
Hello!
Alison's lemonade stand was a huge success! We had the stand open for 2 hours on Friday and 3 hours on Saturday. Thankfully the weather was awesome so everyone passing by had to buy lemonade. Including donations, pledges, and lemonade sales Alison raised $289.09 for the Toronto Ronald McDonald House. We are very proud of her. CKCO television even stopped by and there is going to be a story about Alison's lemonade stand on the news tonight at 6pm and 11:30 pm. Thanks to the people of our community for supporting the sale, and thanks to the kids of our neighbourhood for helping Ali. Special thanks to Sarah for making and selling sculptures for the Ronald McDonald House too. I am going to put photos of the sale on this webpage so please check them out!
Quick update on Baden. He is going to Sick Kids later this week, but he does have an ear infection and an eye infection right now. He seems better since he has started his medicine so hopefully it will pass quickly.
Anyway, that is it for now. Thanks to everyone for checking up on us.
Joanne.
Thursday, September 8, 2005 9:32 PM CDT
Hello,
Just a quick message to let everyone know that Alison is having a lemonade stand to raise money for the Toronto Ronald McDonald House. Both Alison and Baden are going on a sponsered walk at the Toronto zoo to raise money for this very worthy cause.
If you live in Kitchener please stop by and support Ali!
Where: 46 Mary Street
When: Friday September 9 5:30pm to 7:30pm and
Saturday September 10 10:00am to noon
Ali has worked really hard making signs and a donation box. Looking forward to seeing you there!
Thanks,
Joanne.
Friday, September 2, 2005 3:12 PM CDT
Hello,
Good news at clinic today. Baden has grown 1 cm and has gained between 5 or 6 ounces. The doctors have removed 3 of his medicines. Bye to amlodipine, the iron supplement and ranitidine. The doctors are hoping to get rid of the prednisone at the next clinic appointment. Thanks a million to Pat and Kristin for taking Baden to Sick Kids for us, and thanks to Sonya for taking Alison to her cottage for a few days. We really couldn't do this without your help. Baden's illness has really ended up being a family effort!
The doctors have also said that Baden can now take swimming lessons so he can go in public pools. I am going to phone Kidsability about starting in their pool next week.
Also want to remind everyone that next Wednesday September 7 is the 3rd annual Baden Klein Cup at the University of Guelph. I believe the game is at 4:30 or 5 pm at Gryphon stadium. All funds raised will go to a local family with a sick child and to a local children's charity. If you have a moment come out and support this great event. If you want anymore information let me know.
Have a happy and safe long holiday weekend!
Joanne.
Friday, August 19, 2005 7:34 PM CDT
Hello
Before I start I wanted to tell everyone that has asked me that the glasses Baden was wearing on this webpage were not mine. They belonged to my mother-in-law (circa 1970). I would also like to add that the big glasses are back in fashion and that I do like the way they look on me. I do not really wear them publicly though (I usually wear them as a joke!).
Well I have been on vacation this last week. It has been heavenly. Too bad I have to go back to work on Monday (boohoo).
This vacation has had it all...parties, fun day trips, beach days, and hospital days. I have added some new photos to the photo album so be sure to check them out!
My holiday started on the night we celebrated the second anniversary of Baden's transplant. Keith, Sonya, Sarah, Lucy and Abigail came over for some 'Happy Transplant' cake. We had a really fun night with them. It is amazing to me that it has been 2 years already. How quickly time flies...
Then I took the kids to Canada's Wonderland with some family that was here from England. We had a really good time. The kids loved the rides and getting to see Dora the Explorer, Blue and Spongebob Squarepants. I really enjoyed the Italian Job ride, the White Water Canyon, and my favourite 'The Great Canadian Minebuster.' Those old wooden rollercoasters can not be beat. I screamed my head off! I also really enjoyed the Spongebob 3D movie. I particularly enjoyed listening to Lisa laugh her head off at it. Overall, it was a great day.
Then, the next day, we had 2 birthday parties. Happy first birthday to Zachary Hobson and happy fortieth birthday to Paul Turton. We had fun at both parties.
Then, Baden got a little sick. It may have been something he ate but he threw up twice last Sunday and then it just stopped. He didn't have a fever but his blood pressure was up a bit. I phoned Sick Kids and they told me to give him electrolytes. On Monday I took him to Grand River Hospital for a check up but the doctor didn't have any concerns.
Then, we went to Southampton for a few days. We spent a day on the beach at Sauble Beach and a day on the beach in Port Elgin. It was really fun to just relax and play in the water. It was also fun to spend the time with my family from England.
Then today we went to Sick Kids. Baden did not gain any weight but he did grow 2 cm so the doctors and dieticians were really happy. They are referring him to a chest doctor because of his grunting and we are still waiting for a referal to the eating clinic. I got to see Lindsey and Sofia from the Sick Kids Foundation. They are going to use a photo of Baden in their annual review so they showed me the proofs. The photos are really good. The only bad thing about the trip to the hospital today was the weather. It was a brutal 3 hour drive there because of rain and thunder storms. When I first got there I saw another family from Kitchener and they agreed that the drive was brutal. I was so glad to get there, and am now really happy to be home.
My family from England went home today, and I already miss them. It has been so fun having them here. If any of you read this I hope that you will come back soon. Boing Boing.
Lastly, Alison and Baden are participating in the Toddle for Tots at Toronto Zoo on September 24. All money raised is going to the Toronto Ronald McDonald House. This is a very worthwhile cause (we stayed at the house for 6 months in 2003 and have stayed there many times since). We are the spokesfamily for this event and will be on Breakfast Televison on City TV on September 19. The kids already have quite a few pledges (thanks Pat & Phil!), and Alison is going to have a lemonade stand to raise more money. If you are interested in sponsering the kids you can contact me or send your donation to me at 46 Mary St, Kitchener, ON, N2H 3R1. (Cheques should be payable to Toronto Ronald McDonald House - any amount >$15 will receive a tax receipt). You can also go to the Ronald McDonald webpage and pledge on-line. Just follow the links to Toddle and by the photo of Baden you can click on a link to make a donation. Their webpage is www.rmhtoronto.org.
Thank you.
Have a good week,
Joanne.
Thursday, August 11, 2005 9:32 AM CDT
Well, he did it! Today is the second year anniversary of Baden's bone marrow transplant. The doctors said that they first 2 years would be the toughest, and he has come through. Hoping for an easy road from here on out.
Thanks to all of our friends and family for your support over the last 2 years. These have been challenging years but your support has never waivered. One thing this whole experience has taught us is how good most people are. We are humbled by your support and will never forget your role in this incredible journey.
I couldn't sign off without expressing how proud we are of Baden. When he was little we could always see the pain in his eyes. It really broke our hearts that he had to suffer so much. We would have given anything to take that pain away. Since the transplant though it is a different story. He is happy, and the look of pain is gone from his eyes. It is truly a miracle. I'm not saying that the stress is totally gone, but it is way better. Also, we have to say thanks again to Lucy. Lucy, thanks for the bone marrow. You were very brave and I hope that you are always proud of what you did to save Baden. In all honesty, if it wasn't for you, Baden would not have lived. You are a super-star! We love you!
Joanne.
Monday, August 8, 2005 9:42 AM CDT
Hi Everyone,
First I want you to take note regarding the new home photo. Isn't is hilarious! I just had to post it because I thought it was great. I have also updated the photo album with some photos of the kids and a photo of all the recover(ed/ing) SCIDS at this years SCIDS picnic. The SCIDS on this photo are from the ages of 1 to 20, and they all were transplanted at HSC.
Baden went to clinic on Friday. His weight gain was very little but it was still a gain so they were really pleased with that. I've noticed that the more pediasure he drinks the less actual food he eats. He also still does not like the pediasure so it is a challenge. We are still waiting to hear when we are going to the feeding clinic. This issue is obviously to be continued...
They did not reduce Baden's steroids as planned on Friday because he has started grunting again. They sent him for an X-Ray but it was good. I can't help feeling worried about the grunting since that was how we knew his problems started in December. Anyway, Baden is back to Sick Kids on August 19 so I'll have more to say then.
Canadian Blood Services emailed me on Friday. They are critically short of platelets and are going to be doing a campaign to get people in to donate. I am going to be helping them by doing some media interviews. Summer is a hard time of year for blood services so if you can please consider donating blood. Thanks!
Lastly, we know an incredibly brave woman that is battling leukemia at our local hospital. She is 26 years old and is not doing very well right now. Please everyone say a prayer, cross your fingers, send some positive energy her way (whatever you believe in). Our thoughts are with her and her family and friends that are in this struggle with her. We understand this stress more than you will ever know. Special hugs and kisses to Kristin and Charlie her best friends..stay strong and positive. She is lucky to have you as friends.
Love, Joanne.
Monday, July 25, 2005 2:05 PM CDT
Hello,
Thanks for all the great guest book entries since I added the good news on Friday. Now that Baden has gained weight there has been a lot less stress this past weekend. We are continuing to encourage him to eat but we are not getting up tight if he doesn't. For me it is a happy day if I can get all the pediasure in him. Hopefully when the steroids are history things will pick up.
Just wanted to let you know that we went to the SCID's (SCID is severe combined immune difficiency) picnic on the weekend. It is an annual picnic held by the Canadian Immunology Society that reunites all the kids that have had a bone marrow transplant for an immune disorder. It was a really good picnic this year. There were probably about 20 people there that had had a transplant and they ranged from ages 1 to 20. It is really encouraging to see the older SCIDs doing so well. It is also nice to see the families that we have shared time in the hospital with. We saw Bryden and Kylie and the parents of Tyler who is currently at Sick Kids. The picnic is also a time to reminisce about the sweet little children that died so young to the SCID illnesses. You can't help wish when you are at the picnic that their family was there too. At this years picnic we were saddened to hear that 1 year old Ben had died. It was such a shock because last time I talked to his mom he was doing so well. Since Baden got sick in 2003 half of the SCIDs that we have come to know have lived and half have died. I don't understand why some kids live and others don't but I do understand that we are so lucky to still have Baden. Hug your kids everyday because if you have healthy ones you are the luckiest parents in the world.
Anyway, got to go. Have a great long weekend!
Joanne.
Friday, July 22, 2005 2:56 PM CDT
Finally! A message I have been longing to type. Baden has gained weight! Sick Kids said that he has almost gained a kilo in the last 3 weeks. He now weighs 11.015 kilos or 24.23 pounds! Yippee! No talk of g tubes or ng tubes at todays appointment. To say I am estatic is an understatement! All of our hard work over the last few weeks has been worth it. I noticed this morning that his diaper seemed a little tight so I had a feeling that we were in for good news. Also, Baden's blood pressure is exactly what it should be. They have told me to monitor it because it may get too low as Baden comes off the steroids. I do this everyday anyway. They decided not to stop the steroids, and Baden has to go back to Sick Kids in 2 weeks time. The best thing about todays visit was that some of the other SCIDs from around the country were there. Tomorrow is the Sick Kids SCID's picnic so we will get to see them all. It is really great to be able to see kids and adults of all ages that have beat a SCID's illness. Also, if you can't take more good news do not read on! Baden went on the potty! Yahoo!
Anyway as you can see this has been a good week for the Kleins. Thanks to everyone that has left a guestbook message. Thanks to my mom & dad for taking Baden to the hospital for us today. We really appreciate it.
Have a good week, and don't forget to donate blood if you can. YOU CAN SAVE A LIFE!
Love,
Jo.
Friday, July 15, 2005 12:05 AM CDT
Hello
I just talked to the doctor and dietician at Sick Kids. They were very happy that Baden has been drinking the pediasure with fibre. They said that it is normal for kids that start pediasure to lose their appetite because the pediasure fills them up. Baden has eaten very little this week (almost nothing in fact) so it was reassuring to hear the doctor say that. They said that as long as he starts gaining weight then he won't need a feeding tube so hopefully next week at Sick Kids he will have gained weight, and hopefully if they stop the steroids next week then his appetite will increase even more. The people from Sick Kids have mentioned a 'g' tube (feeding directly to stomach from the outside of the stomach) and 'ng' tube (feeding to the stomach through a tube that goes over his face an up his nose). I don't want either but I am especially opposed to the 'ng' tube. Baden has had them before but he always pulls them out. I do not want to have to deal with that at home. Anyway, all I can do is wait and see and hope that by miracle Baden starts eating and gaining weight (please God).
Anyway, that is it for now. We are taking the kids to Marineland tomorrow. That should be fun. Hopefully the heat won't make it unbearable. Have a great weekend everyone.
Joanne.
Monday, July 11, 2005 10:49 AM CDT
Hello Everyone!
Thanks for checking in. We have been very strict with Baden's eating over the weekend and he has 2 new foods on his list. (Raisins and Pancakes with extra egg). As for the gross vanilla supplement the doctor's prescribed Baden hates it. If I mix it with milk during the day, Baden freaks out! Last Friday night he screamed for about 2 hours when I put him to bed because I had added the supplement to his milk. Over the weekend I developed a plan to get Baden to drink the vanilla supplement. I put him to bed with a very small amount of water. Once he is asleep I go in and stick the bottle with the gross stuff in his mouth, and he drinks it while he is sleeping. I usually have to go in a couple of times while he is sleeping to put the bottle back in his mouth. Usually by the time he wakes up the bottle is gone. His teeth may rot and decay but he will gain weight! Anyway it appears to be working for now so hopefully that won't change. I got good news today from Baden's dietician, and that is that the supplements might be free. She has asked Baden's doctor at Sick Kids to fill in a form and hopefully it will be covered.
Anyway, that is it for now. Thanks for checking in, and thanks to those that phoned after my last entry. (Sorry if I was a bit grumpy!).
Have a great day,
Joanne.
Friday, July 8, 2005 2:32 PM CDT
Hello,
I just talked to my parents and Baden has lost weight again. Mom said the doctors were very close at admitting him because his weight is off the chart (i.e. for his age the chart does not go as low as his weight). The doctor said that it is getting dangerous, and that they still class him as a 'critically ill child.' Why then in May did they tell me and Fred that they consider him cured! I know that maybe he is cured of his immune disorder but there are so many side effects and he is not cured of those. Maybe they shouldn't have said that he was cured. This is what the doctors said today regarding Baden's weight:
-Baden's problems are behavioral and they are referring him to the Failure to Thrive clinic (psychiatry).
-They have given him a prescription for Pediasure again and we are supposed to give it to him. We have tried this so many times so God knows how this will go over!
Excuse me but they told me not to force him to eat, what am I supposed to do? Baden is not naughty at dinner time, he just simply sits there and waits until we are done so that he can leave the table. I am so frustrated, and I'm sorry if I'm rambling but this is driving me CRAZY. The doctor's said they were close to admitting him and putting in a 'G' tube. If that happens how am I going to get time off work? Unless you've got a sick child you have no idea the stress the parents go through. I'm not kidding...it is non-stop! Either way I love Baden and would do anything for him. I'm just being selfish in wishing that we could have a normal life. When I have a day like this I have to remember the kids that didn't make it. I can't imagine how their mom's get over it so I just have to trudge on.
I guess now that I've had a pity party for myself I should tell you the good news. Baden did not have to have blood work today! This is the first time that he has gone to Sick Kids and they have not even poked him once. They weaned his steroids, and told my parents that except for his weight they are pleased with him in every way. They said that at his next visit he might be off the steroids completely so I have to really monitor his blood pressure in case it is too low. Mom said that once again they were followed around by a photographer trying to get photos for the Sick Kids annual report. Baden really doesn't understand all the commotion that his existence causes! We are happy to help Sick Kids in any way we can.
Anyway, what I have learned from typing this entry is that you should never update the Caring Bridge page when you're having a bad day, when you're bummed, and tired and grumpy.
I will try to remember this for next time.
Have a good weekend.
Joanne.
p.s. Thanks to my Mom & Dad, Kristin and Alison for taking Baden to the hospital today. I REALLY wish I could go to every hospital visit but it is unfortunately not possible. Maybe I will win the lottery or something...
Wednesday, July 6, 2005 1:24 PM CDT
Hello
Just a quick update to tell you all that we had a good time on the long weekend. Baden's eating has not improved, and he was really constipated for a couple of days. I increased his dose of lactulose and now he has runny poos. I just can't seem to get a good balance for him though I guess it makes sense that he is not pooing if he is not eating well. He did eat almost 2 bowls of cheerios on the weekend but apart from that things are the same. The concerning news is that the grunting appears to have returned (AARGH!). Thankfully Baden is off to Sick Kids on Friday so hopefully the doctors will be able to see why the grunting is back. The grunting isn't very bad, but it is back. Interesting that it came back while he was having trouble being constipated. I always wondered if it was related to that somehow. I don't understand how one minute he is constipated and the next it is runny. And why does he have to struggle so much to get it out when it is runny? Hopefully we will get the answers to all these burning questions soon. Anyway, that is it for now, I just wanted to leave a quick note. I will provide a more detailed update after Friday's visit to Sick Kids.
Thanks for checking in, and thanks to those of you that leave messages...it means a lot.
Joanne.
Monday, June 27, 2005 10:44 AM CDT
Hello,
Sorry I didn't update sooner but my computer was acting up. Baden went to Sick Kids on Friday. It was a busy day but thanks to my Mom & Dad for taking him. He first went to nephrology (nephrology is the kidney doctor's, they have been following Baden because of his blood pressure problems - blood pressure is controlled by your kidneys). They were very pleased with Baden and they don't want to see him again until March 2006! I cannot tell you how happy I am about this. Obviously they will see him sooner if they have to.
Baden also saw immunology. I don't know how, but he lost weight again. I was sure that he would gain weight because in the last few weeks he has eaten a little better. The doctors are concerned, and they want me to offer him more meat. For example, in mid to late afternoon we usually give him pretzels, or cheese, or yogurt, etc. The doctors want us to offer meat. I'm sorry but cooking chicken nuggets is not my idea of an afternoon snack. I think that is more like a meal! Anyway, if that is what the doctors want us to offer Baden then we will. We have always done everything exactly that the doctors have asked. I spoke to Dr. Moses this morning and he said that if Baden's eating doesn't improve soon then they will do the g-tube. I had thought the threat of a g-tube was gone, but apparently not. I really hope it does not come to that. The good thing about seeing immunology was that Baden started his second series of his immunizations. He had been immunized as a baby but when they do the chemotherapy for the bone marrow transplant it wipes out any vaccinations. To start them over Baden had to have good IVIG (blood) levels, and be either off the prednisone or on a low dose. This is the first time that the doctors have felt that he is ready, so that is a really good sign. Mom said that when they immunized him, he cried a little and then he said to the nurse that immunized him 'thank you.' Apparantly the nurse was so moved that Baden thanked him for giving him a needle! What a polite little boy I have (just like his mother -ha,ha). Anyway, if everything goes well he will get his next needle in 2 months. Sick Kids also told me today that they want to see Baden every 2 weeks until he is weaned off the prednisone. We had been told every 3 weeks before so this is a bit of a drag. Anyway, his next appointment is on July 8.
Mom said that a photographer followed Baden around the hospital on Friday. Baden is going to be in the Sick Kids annual report so they wanted photos of him. I wish I could have gone to the hospital but I have to budget my remaining vacation time so that it lasts for hospital visits up to the end of the year.
We had a good weekend. Yesterday we went to the beach at Turkey Point Provincial Park. It was fun to have a day outside laughing and playing with the kids. On Saturday Alison was so excited about going to the beach on Sunday that she had all her beach toys by the front door and ready to go. How cute is that? Turkey Point is good because the water is shallow enough for the kids. Baden had never been to a full public beach like that before so he really liked playing in the sand. He whimpered when I brought him in the lake in his little boat, but he got over that in about 5 seconds. Hopefully we will be able to do more fun stuff like that this summer. Last summer Baden had to be isolated, and the year before was his transplant. This really our first 'normal' summer since Baden was born. We are going to Southampton on the weekend to stay with my Mom & Dad at their trailor so that should be fun.
Anyway, I would like to end by saying happy anniversary to my hubby Fred. I love you, and always will. (xoxoxo)
Have a good week.
Joanne.
Thursday, June 16, 2005 1:14 PM CDT
Hi
Well it has been a while since I updated so I thought I would let you know what has been happening. Baden had a good visit with Dr. Rosner last Friday. He had actually gained weight! His weight gain was not big but it was better than nothing at all or a loss. On Tuesday this week he ate a whole slice of pepperoni pizza so things are definately looking up on the food front. I fell like he has actually turned a corner. Don't get me wrong, he still does not eat most things but at least he has eaten something.
Baden had a little cold this week. I was worried but he seems to be getting over it pretty well on his own. I think he may have even given it to me! Last night we were playing and he jumped at me and hit my front tooth. It hurt so bad that I thought the tooth would fall out. Anyway, my tooth cut his head. It is a really small cut but I of course started thinking 'God please do not let that get infected!' Anyway Baden was up and playing within minutes so I think he is okay.
Baden is really cute right now. If you say 'I love you' to him he says 'I love you too.' It is so sweet, and I can't get enough of it so I tell him I love him constantly. His little voice is music to my ears.
Alison is supposed to have a fun water day at her school today. Wouldn't you know it that after a few weeks of extreme heat it is cooler today. I like the weather right now but I wish Ali had a better day for her water day at school. The other night we were driving home from Guelph in this huge thunder storm. It was pretty scary and it freaked Ali out a bit so hopefully it won't thunder today. Since the thunder storm the other day she has been asking me about tornados a bit so I think she has learned that weather can be nasty. I told her that tornados happen when the sky is angry so she wanted to know why would the sky be angry. It turned into a mini geography lesson that was okay for a 5 year old to understand. The joys of being a mom (I wouldn't trade them for anything in the world!).
Ronald McDonald House in Toronto have asked us to be their spokesfamily for the annual Toddle for Tots at Toronto Zoo in September. It is a really fun event. Kids get sponsers and they walk on a safari to certain animals at the zoo. At each animal, there are stickers and funs things for the kids to do such as face painting, bowling, etc. Anyway all of the money goes to the Toronto Ronald McDonald House, and by collecting pledges kids get t-shirts, lunch boxes, etc. It is a really fun event and anyone interested should mark it on their calendar for Saturday September 24. I will put more details on Baden's web site once I know them.
Anyway, that's it for now. Just wanted to remind people to donate blood if you can. They have real shortages during the summer months, and with the long weekend coming up there will be a great need for the blood. We appreciated all those blood donors that gave Baden a chance at life by donating platelets in the summer of 2003. Unfortunately there are lots of families like ours so please give blood if you can.
Baden's next doctor's appointment is on June 23 at Sick Kids. He will be seeing immunology and nephrology so I will update again after those appointments.
Have a great week,
Joanne.
Thursday, June 2, 2005 3:16 PM CDT
Hi
Below is the article from the Toronto Star called 'How Baden Got His Life Back.' The Star did such a wonderful job with his story. They put his beads on every page, ending on the page where the story about Baden was. The photo above is from the paper. I have to say I shed a few tears as I read the article. I'm looking forward to going home tonight to read all the other Sick Kid's hospital stories in peace and quiet. Thanks to Elvira Cordileone, and Steve Russell of the Toronto Star, and thanks to Lindsey at the Hospital for Sick Children Foundation.
Baden is off to Sick Kids tomorrow for a check up so I'll let you know how that went with-in the next few days.
Thanks for checking in!
Joanne.
___________________________________________________________
How Baden got his life back
Syndrome led to bone-marrow transplant
Now that `he's developing, he's a beautiful child'
ELVIRA CORDILEONE
STAFF REPORTER
Doctors advised Joanne and Fred Klein to say goodbye to their infant son just before they wheeled him into surgery. They were about to put a shunt in his head to relieve pressure caused by cerebral hemorrhaging.
It was August 2003. Baden was 6 months old, and battling Wiscott Aldrich Syndrome, one of several inherited diseases classified as severe combined immunodeficiency.
Baden survived the surgery and, three days later, underwent a life-saving bone marrow transplant.
"Just before the surgery was the first time (in two months) that I touched him," Joanne recalls. He had been in isolation in the bone marrow transplant ward, where skin-to-skin contact was forbidden.
Doctors at Sick Kids hospital had been preparing Baden for a bone marrow transplant when blood started to seep into his brain. It was caused by too few platelets in his bloodstream, meaning his blood didn't clot as it should.
The surgery was risky but, without it, Baden would die. Hours earlier, he'd had had a seizure, his heart had stopped and doctors had worked frantically to resuscitate him.
Baden was cured by receiving new bone marrow, and his immunologist, Eyal Grunebaum, is pleased with the progress of his irrepressible patient, now 2.
"He's growing. He's developing. He's a beautiful child," Grunebaum says, noting these types of immune disorders strike one in 25,000 children.
"He still requires some maturation time for adjustment to the new bone marrow. We anticipate that he will be completely healthy."
Wiscott Aldrich is caused by a defective gene passed from mother to son. A carrier has a one-in-four chance of having a son with the disease.
According to an online handbook from the U.S.-based Immune Deficiency Foundation (http://www.primaryimmune.org), the severity of the disease depends on how much the gene mutation interferes with the production of a protein the gene is supposed to produce.
Lacking the white blood cells to fight infections, Baden, who lives in Kitchener, had been in and out of doctor's offices, emergency wards and hospital rooms in Waterloo and London since he was 3 weeks old.
After the diagnosis, Joanne says it became fairly obvious he needed a bone marrow transplant.
Bone marrow is a sponge-like tissue found in the centre of certain bones. It contains stem cells that are the precursors of white blood cells (they fight infection) and platelets (needed for blood clotting).
Transplantation involves taking marrow from a healthy, compatible donor and transfusing it into someone unable to produce these cells. If the transplant works, the donor cells rebuild the patient's immune system.
In late June 2003, Baden was admitted to Sick Kids. He remained in his hospital room until November, enduring countless tests and procedures, and more than 200 transfusions.
"When they did the first spinal tap, Baden screamed and I sobbed in the hallway," Joanne recalls.
Grunebaum, a clinician and scientist who spends most of his time in the lab researching immune deficiency, says that, until quite recently, children like Baden routinely died in early childhood.
Sick Kids did the first bone marrow transplant on a patient with immune disorder in 1991, says John Doyle, a hematologist and head of the hospital's bone marrow transplant unit. The survival rate is 70 per cent.
The earliest transplant patients are now nearing age 20, and that's considered a cure, says Chaim Roifman, head of Sick Kid's immunology and allergy division.
Roifman credits Sick Kids with developing a technique that allows doctors to transplant marrow from unrelated matching donors.
Baden was lucky on that score. Although his parents and his sister, Alison, 5, weren't suitable donors, salvation came from his cousin, Lucy Mason, who was 3 at the time.
The children are related on both sides — Joanne's brother is married to her husband's sister — and matched 100 per cent.
Doctors took 112 millilitres of marrow from Lucy's pelvic bone and transfused the fluid into Baden's veins.
"It looks like any other bag of blood and is almost anti-climatic," Fred says. "After the transplant, for the first time, he had colour in his face and he started on a slow, steady road to improvement."
There have been ups and downs since his discharge in November 2003. But Joanne says her son has been very well since the end of March, although he still takes eight different medications a day.
"You have to have a positive outlook. You have to believe your child is going to make it, otherwise you'll go crazy," she says.
Monday, May 30, 2005 12:28 AM CDT
Hi Everyone,
Just a quick update to let you know that Baden is doing well. I don't know why but for the last week or so he has been waking up in the night a bit so it has been a little tiring. I'm hoping that it is just his 2 year molers coming through, and not anything more.
I wanted to remind anyone interested that Baden will be in the Toronto Star on Thursday June 2. There will be a whole section on Sick Kids Hospital and Baden will be in that. The paper is also going to use Baden's bravery beads in the section. I am really looking forward to seeing the paper. The reason that they are doing the paper is that next weekend is the Sick Kids Telethon (Night of Miracles) on TV. If you can afford it, this is a really good charity to give to. We know we wouldn't have Baden without it!
Anyway, I said it would be quick...thanks for checking in!
Joanne.
Thursday, May 19, 2005 10:20 PM CDT
Hi again,
First, thanks for the nice messages in the guestbook. It really means a lot to us that you take the time to check in on Baden.
You will notice that there is a new photo on the home page. It is from the radiothon that I spoke at on behalf of the Hospital for Sick Children. I spoke on 4 radio stations in total, and the hospital raised a lot of money. There are also photos on the photo page so be sure to check them out!
Baden was a Sick Kids yesterday. Another long day but worthwhile because we got some good news. The fluid on his heart is gone. The doctor's do not know what caused it in the first place but they are relieved that it is gone. The only thing with his heart now is that one of the walls around the heart is thicker than it should be. The doctor's think that this will go away once his blood pressure is better, and he is off the steroids. Cardiology wants to see him in a year unless something else happens. Immunology was also pleased with Baden. His blood pressure was a little high in clinic but they said that they are happy in every other way with him. They think that most of his eating problems are behavioral and not medical issues. They gave us lots of pointers and told us that the next thing that they could do to help us would be to send Baden to the failure to thrive clinic run by the physciatric department. They don't think it will come to that but in order for improvement we have to stop giving in to Baden so much. They said that it is normal for parents of a kid that has been so sick to tread lightly around the kid. In basic terms...Baden has been playing us like a fiddle! Anyway, we are working on it. He didn't eat much today but the occupational therapist said that it might be 3 days before Baden eats something. Time will tell. At clinic yesterday the doctor kept saying that Baden is not sick anymore! It is music to my ears when they say things like that. We still have to make sure that he is not by sick people but in most ways he is a normal 2 year old. (Finally!).
Anyway, that's all for now. Have a great long weekend everyone. It always makes me laugh that we celebrate Queen Victoria's birthday in Canada when they don't even recognize it in England!
Have a good one.
Boing Boing.
Joanne.
Sunday, May 15, 2005 4:55 PM CDT
Hello
Sorry I haven't up dated for a while. Baden didn't go to the hospital last week the first time for a very long time. We are going on Wednesday so I will do a full update after that. He is doing okay right now. The only exciting news is that he ate PIZZA! We were so happy. Any food in his belly is a bonus.
Anyway, just a short message for today. Please check back later in the week for news from the doctors!
Also, only my family will understand this but...WBA okay! Up the Baggies! Yeah!
Love always,
Joanne.
Friday, May 6, 2005 2:50 PM CDT
Hi again
Baden went to Grand River Hospital today and they were very pleased with him. His regular doctor was not there, but another doctor saw him and she said that he was really cute (which of course is true!). He is going back to Sick Kids on May 18 for an echocardiogram and to Grand River Hospital the week after.
Yesterday we went to Sick Kids for Baden to have a photo shoot for a Sick Kids section that will be in the Toronto Star on June 2. They took many photos of Baden and we were interviewed by a reporter. They are going to use his bravery beads across the top page of every page in the section to show his journey to wellness. It should be really good. Sick Kids Hospital is also going to use the DVD we have of Baden getting his transplant for fundraising so we are really happy to be able to give back to the hospital that helps so many children every day. I will give you more details on all of this once I have it.
I would like to wish a Happy Mother's Day to all mom's that are reading this. I hope that you have a wonderful weekend. To my own mom...I love you and thanks for all the support that you give me. To me mother's day is another reminder that I have been given an amazing gift. An opportunity to mold the lives of 2 amazing little people. I learn as much from them as they do from me. Since Baden has been sick I feel that my head is now screwed on properly. It doesn't matter if they make a mess or if they talk back or if they dye their hair pink, orange and blue. It doesn't matter if they aspire to do something grand or they have smaller dreams for their lives. What matters is that we support them, and hug them often, and tell them they are loved. Let them know that they are unique and special and that no one else is like them. Don't worry about cleaning up today, spend some time with them...go to the park, read a book, cuddle on the couch. Motherhood is the greatest gift I have ever been given. I wouldn't change a thing because our journey has made us who we are today. As mother's I think we need to remember all this...
Anyway, have a great weekend.
Thanks for checking in, and don't forget to sign the guestbook!
Love, Joanne.
Monday, May 2, 2005 4:17 PM CDT
Thanks to Julie for taking Baden to the hospital on Friday. The doctors were really pleased with him. The only issue right now is the eating. They want us to try and give him sippy cups, and not give him drinks if he doesn't eat. Basically this means he will be getting very little nourishment. We went to a restaurant on Saturday and Baden inhaled the french fries so at least we have found something that he will eat! (The dietician probably won't be too happy!). Oh well. All that we can do is try our best and hope that he will suddenly get this big appetite. The scary part is that as he is weaned off his steroids again he will probably eat even less than he is right now. No use worrying about what you can't change.
Sick Kids Hospital wants to do a photo shoot of Baden so that they can use him for fundraising. I'm pretty excited about that. It is the least we can do to help them since they gave us Baden back. I will let you know more once I have more details.
Anyway, that's all I have to say for now.
Love to everyone.
Joanne
Monday, April 25, 2005 12:27 AM CDT
Hello again,
Sorry it has been a while since I last updated. Baden went to Grand River Hospital last Friday for his weekly check-up, and to get a dose of IVIG (a blood product). The doctor was really pleased with him. The doctor got the dietician at Grand River Hospital to look at him too. The dietician sent pediasure home and gave all these tips on feeding Baden. This is the fourth dietician Baden has seen, and no matter what they do or say he will not eat or drink the foods they want. Right now his diet consists of milk, juice, and water. Occasionally he will eat yogurt, or fruit sauce, or crackers with cheese whiz. That is about it though. We have done everything and nothing works so it is really frustrating. Doctors still mention the possibility of a 'g' tube but so far they haven't booked an appointment to get one. I honestly can't remember the last time that we had a stressfree mealtime at our house. It really is a drag. I know that many of the kids have issues with food post transplant, but it is still hard because we are obviously worried and concerned that he doesn't eat.
On a happy note though, yesterday Baden started walking around the living room as if it is something he has always done. It is so cute seeing this little person walking. I have a feeling that I won't be able to catch up with him anymore. I told Fred that it is time to get the gate out so that we can at least confine Baden to an area. Baden's physiotherapist came this morning and she was so happy with his progress. We're glad that things are slowly getting back on track.
We were going to go to Niagara Falls last weekend. We haven't really been away just the 4 of us since Baden was born. Everytime we've planned something Baden gets sick and we end up cancelling or rescheduling. Finally though, last weekend came and we thought we would splurge and get a hotel in Niagara and have some fun. Then we heard the weather forecast. We figured that if it was going to be freezing and snow / rain all day we might has well stay home. Anyway we ended up cancelling our weekend away. It seems that things just don't go as we would like them. Maybe we need to not plan and just go and then things will happen!
Well thanks to everyone that has left a message. The messages mean a lot, and I'm sure when Baden is old enough to understand he will be glad to see who took the time to wish him well.
Have a good week everyone.
Joanne.
p.s. Baden is off to Sick Kids SCID clinic on Friday so I will try to update as quickly as I can once I know what the doctor's have to say.
Friday, April 15, 2005 8:07 PM CDT
Thursday April 21/05
Quick Update:
Baden has a sniffle. He is going to see Dr. Rosner tomorrow so hopefully it will be nothing. I've noticed that both he and Ali have been congested the last few days. A few people I work with have nasty colds right now so hopefully the kids don't have anything too serious. Yesterday was my birthday so we had a house full of family bearing gifts (Thanks everyone!). My most wanted birthday gift is for Alison and Baden to be happy and healthy so lets keep our fingers crossed that nothing too bad comes our way. I'll do a full update again soon.
Thanks for checking in!
Joanne.
What an exhausting day. My alarm went off at 4:44 am and I left for Sick Kids Hospital with Baden, Alison and Kristin in tow at 5:30. The drive wasn't too bad, that's the good thing about leaving so early in the morning.
We arrived at Sick Kids at 7:30 just in time for my interview with EZ Rock 97.3 (Sick Kids Radiothon). The interview went really well so they asked me to go on the MIX 99.9 and 1010 CFRB as well. It was really good to be able to help the hospital. I heard that in the last 3 days they have raised over 3 million dollars! The DJ's really liked Baden's bravery beads. Cameras were flashing, and videos were rolling. Tonight we are even on the web. If you go to www.mix999.com and follow the links to the photo gallery of the radiothon you will see a photo with me and Baden. One of the other kids on the web page is Manuel. We shared an anti-room with him last time we were in the bone marrow ward. Next year he gets to go to England to meet Harry Potter (that's when they are making the next movie). Meeting Harry Potter was his 'wish.' That is a really neat wish. We hope that he has a great time!
Anyway after the interviews, Baden had a busy day. Bloodwork, ultrasound, D.M.S.A (kidney scan), urine & stool test, nephrology appointment, and an immunology appointment. It was one of those days when the doctors say we'll be right with you, and an hour later you're still waiting. I got home close to 8pm so it was a long day, and I am now going to bed!
Overall, the doctors were really pleased with Baden. Dr. Grunebaum said to just keep doing what we are doing because it is working right now. They can see a big improvement from how Baden was 2 weeks ago. Next Friday Baden will go to our local doctor, and he will go to Sick Kids the week after that. He also needs an immunogloblin infusion so they are going to try and set that up in Kitchener. (Immunogloblin is blood product, and even though it comes from a blood donor it is not red blood - it is an immune system boost for Baden because he hasn't had any vaccinations yet). Hopefully Baden can stay healthy from now on. Developmentally he is doing pretty good. He is saying lots of words, and he even walked his first steps this week!
Anyway, thanks for checking in. I'm going to see about that car I won on Tuesday so I'm really excited!!!
Have a great weekend,
Jo.
Tuesday, April 12, 2005 3:17 PM CDT
Hello,
Just wanted to add a quick reminder that I will be participating in the Sick Kids Radiothon on Wednesday and Friday. If you want to hear a little bit about Baden's brave fight with Wiskott Aldridge Syndrome tune in as follows:
Mix 99.9 Wednesday morning between 7:30 and 8:00
97.3 Friday morning between 7:30 and 8:00
Wish me luck, I hope I don't stutter too much, and I hope that Baden will inspire people to donate money to the best children's hospital in the world!
Thanks for listening!
Joanne.
Saturday, April 9, 2005 2:07 PM CDT
You are never going to believe it!!! I won tickets to last nights Toronto Raptors game from the Toronto Sun. All of the ticket winners were eligible to win $10 000 or a 2 year lease on a 2005 Ford Freestyle. Apparantly the Toronto Sun had over 11 000 entries of which 18 were eligible for the prizes. Anyway to cut a long story short, I WON THE CAR! I get to pick the colour and everything! I've never had a new car or a car with a CD player in it! Oh bliss!!! I was so excited, I was jumping up and down on centre court. I was interviewed by the Toronto Sun, and today they came to take photos of our family for a feature article tomorrow. Yippee! I was really emotional when I won. After the 2 years we have had, this is an amazing treat. The prize was a result of an entry I mailed to the Sun for The Toronto Sun Bingo contest. A few people laughed at me for playing but guess who gets the last laugh! Next visit to Sick Kids Hospital will be in style. When I told the Sun about Baden and how useful the car will be for the commute to Sick Kids Hospital they were really touched with the story. I was told that the people from Ford were
happy as well. Anyway got to go pick the colour of my new car so I'll talk to you later!
Joanne.
p.s. Baden is doing well, and is blood pressure is a lot better. He is going to Sick Kids next week for an ultrasound, a scan of his kidneys, and bloodwork.
Tuesday, April 5, 2005 6:12 PM CDT
Hello!
Baden's blood pressure is improving. Since Saturday it has been consistently between 110 and 115. He has only needed nifedipine 1 time. He has been to the hospital everyday to get his blood pressure done on the machine. Yesterday he also went to Grand River Hospital for I.V. Pentamidine. Kristin said that he was poked about 12 times before they could get the I.V. started. His veins are scared so bad. I hate it when he is like a pin cushion. Thank God they got the I.V. and were able to do the medicine. Today we found out that the government has approved him having the atovoquone, and it isn't going to cost us anything! This is great news for Baden because the atovoquone replaces the pentamidine which means he won't have to be poked for an I.V. Atovoquone is an oral medicine! Yippee!
Baden's eating is still a big problem. The O.T. says that we have to be patient and try and make mealtimes happy. It is really hard when you put the food in front of him and he just screams for 30 minutes. They have told us not to force him so I guess he'll just be getting drinks for now. I don't know what else I can do I've tried everything. I guess this is a normal part in the road to recovery.
As you can see I finally reduced the photo on this page. I have no idea how I did it so I hope I don't have to do it again. I guess I'm not as dumb as I look!!!
For those checking on my mom, she is doing okay. She came home from the hospital on Monday. She said that her knee hurts alot. She is stubborn though so she is getting around a bit. The doctor said that of all the replacement surgeries, the knee replacement is one of the most painful. I guess the pain is to be expected. I told her that I want her to do the can can at my birthday(in 2 weeks). I guess we will have to wait and see.
Anyway, thanks for checking in.
Lots of love,
Jo.
Friday, April 1, 2005 1:14 PM CST
Hello
It's Joanne again. Thanks Kim for doing the update yesterday. It was such a panic and a rush yesterday afternoon when we were told that Baden was being admitted to Sick Kids Hospital. The doctors said that if his blood pressure was over 130 at 7 pm they would want him to be admitted. Luckily his blood pressure was exactly 130 so we were able to stay home for the night. My neighbour who is a nurse even came over to make sure his blood pressure was good (thanks Diane). Thanks also to Kristin for staying over last night 'just in case,' and Kim for loaning her clothes so that she wouldn't stink today (ha ha).
Anyway this morning I packed all of Baden's things and sent him to Sick Kids with Keith (thanks Keith). He already had this appointment booked for a while. The doctor called me a while ago and this is what he said:
The blood pressure is a significant issue. It is active and dangerous given Baden's history of an intercranial hemmorage. They gave Baden nifedipine at the hospital because his blood pressure was 122. They have some concern that my blood pressure cuff is not working properly because they were getting different readings on the manual cuff versus the machine. For the next 2 days I have to bring Baden to Grand River Hospital to have his blood pressure monitored on their machine. If it is over 125 I have to call Sick Kids. I also have to call if he bangs his head a lot, or becomes irritable. They are prescribing him another blood pressure medicine, and reducing his steroids so this should help.
They have arranged for Baden to go to Grand River Hospital on Monday for a dose of I.V. pentamidine.
They are concerned that Baden is not getting enough calories buy I am going to work with a local occupational therapist to get Baden eating.
They have arranged for him to get pentamidine at Sick Kids on April 15, and he will also get a ultrasound of his lungs (to see if his respitory problems have improved) and kidneys (to see if there has been any damage from his high blood pressure).
The doctor also told me to call Sick Kids anytime night or day with any problems. We have to really watch his blood pressure right now. I will be watching him like a hawk. Hopefully with the new medicine his blood pressure will improve by next week.
Anyway, that's it for what the doctor said. The only other new thing is that I am going to be interviewed by 2 radio stations for the Sick Kids telethon. I will be on the mix 99.9 at 7:30 am on April 13, and 97.3 at 8 am on April 15. Hopefully I won't make a fool of myself, and lots of people will be inspired by Baden's (and Lucy) story and make a donation to the hospital.
Anyway, that is it for now. Thanks so much for checking in and for leaving a message. Your messages mean a lot to me and Fred.
Lots of love, Jo.
Thursday, March 31, 2005 2:27 PM CST
Hello all,
Baden is being admitted back into hospital today, so Joanne asked me to send in a quick update as she has to leave ASAP.
Here it goes...........
As you are all aware Baden has been struggling with high blood pressure ever since he went back on his meds. The last couple of days it has been extremely high and there was growing concern as he was entering the "risk for stroke" level. Today his blood pressure is 160 and the Dr.'s at Sick Kid's are afraid he will have a brain hemorrhage.
Update...............
Just received a quick call from Joanne. The hospital called back and advised that they are going to wait until 7 pm tonight before deciding if they should admit him. His blood pressure is currently 120. As long as it does not go above 130 again they will not admit him this evening as he has an appt. at Sick Kid's tomorrow anyway. They advised that they are going to schedule him in to see a blood pressure specialist..........which means possibly more meds.
That is where it is at right now. Joanne will update as soon as we know more.
Remember him in your prayers and also say a prayer for Joanne, Fred and Alison. Your strength and courage never ceases to amaze me. Love you guys.
Kim
Monday, March 28, 2005 12:57 AM CST
Hi,
Baden went to his pediatrician this morning. His temperature was okay. His blood pressure was borderline. We have been having problems with his blood pressure all weekend so I'm waiting to hear if they are going to increase his medication or add another medication. When the doctor did his saturation level I held my breath. Baden has been coughing and wheezing all weekend. I knew that if his SATs were less than 90 that they would admit him back to the hospital. When they put the machine on his toe it kept beeping and the number was around 82. The nurse wiggled the thing on his toe and the SATs went up to 98. I was never so happy in all my life! (Okay, that might be an exaggeration!). The doctor looked him over, and after getting the approval of Sick Kid's Hospital she prescribed Baden 2 different asthma puffers. He should only be on them short term, and hopefully (all finger's crossed) the grunting will go away, and then life can be normal. (Whatever 'normal' means when you live in my mad-house!). The nurse will still come to the house to see Baden daily, and if his coughing persists Baden will go to Sick Kid's Hospital on Friday. If the coughing stops he will go the following Friday. Anyway, after a weekend of coughing, and worry I'm glad the doctor looked him over and thinks that he is okay to be at home.
Thanks to everyone that posted a message or called to see if Baden was okay over the weekend. There is a little boy in our community that is undergoing a risky surgery today. His name is Christopher and I met him and his mom at the hospital a couple of months ago. Please keep him in your prayers today. His website is www.caringbridge.org/canada/christophersstory
Also, my mom is getting her knee done tomorrow so keep her in your thoughts as well.
Thanks,
Jo.
Friday, March 25, 2005 2:15 PM CST
Hello Everyone,
Thanks for checking in. Hope you are having a good long weekend. Baden's cough is persisting. Last night he drank a bottle and then had a coughing fit, and it all came back out. Today, his blood pressure is a little high so I had to give him nifedipine. He is grunting quite a lot, and at times appears to be having a hard time breathing. Despite all this though, he is happy and playing. The only time that he is really unhappy is when I try to feed him. Feeding him is impossible. The doctor said not to worry about the feeding though as long as he is drinking at least 1100 mls a day so that he doesn't get dehydrated. Fred and I are really worried about him, but the doctors know how it is and they think it is okay for him to be at home so it must be okay. We are trying to make the best of it, but it does nag in the back of our minds what are we going to do if he gets readmitted. It is a huge burden, not just the obvious worry over Baden but also how will this affect Ali, how much support will we get from our works, and how are we going to afford it. Hopefully in this season of rebirth, the problems will go away and not come back. Maybe our worries will never be an issue. Either way, Baden is going to see Dr. Rosner at 8am on Monday morning.
Anyway, Fred, Alison, Baden and I wish you all a really good easter. Hope the easter bunny comes your way and leaves you lots of yummy chocolate.
Love always,
Jo.
Wednesday, March 23, 2005 6:49 AM CST
Hello
Baden is home! I know I should be excited, and I am excited, but Baden seems to be coughing a lot this morning. I don't know why he is coughing so it is causing some stress. It is good to have him home. He is really snuggly today so I'm enjoying that. I will call the doctor this morning to tell him about the coughing. Hopefully Baden will stay out of the hospital. I know that a nurse, dietician, occupational therapist, and physiotherapist are going to be coming in to see Baden so it will be really busy at home.
Anyway, I have to go to work but I wanted to update that Baden is back home where he belongs!
Joanne.
Monday, March 21, 2005 2:23 PM CST
Hi again,
Just to let you all know that Baden is not going home today. The doctors had assured me that it would be today but they cancelled the original appointment to have Baden's pic line removed when Baden had a fever and they couldn't get another appointment for today. Now, it is supposed to happen tomorrow. So the plan for tomorrow is that Baden will get his pic line out and then get discharged (provided Baden doesn't get a fever in the meantime!). Pat is going to come up for the day tomorrow, and then Fred will pick up Baden. All of the doctor appointments that usually happen on the day of discharge have happened today. My work won't let me have 2 days off so I've done some juggling to make all of this happen. Provided Baden gets out tomorrow this has all happened with the best of timing. Pat couldn't come today so it is good that it is tomorrow, and as far as the stuff I need to do at work this week, Monday was the best day for me to be off. The only part that concerns me is that we've been told tomorrow before and it doesn't always happen that way. Baden is doing well today though. We spent a lot of time playing in the parent lounge this morning, and then we went for a walk. We've made the best of it.
The staff doctor said this morning that he could understand our frustration over the 2 on-going issues, the grunting, and Baden's diet. I think that they are going to work with us in the next few months to get these issues resolved. The doctor said that he will need a medication called atovaquone, and it is not covered by the Ontario drug plan or Fred's work plan. It will be approximately $200 a month so that is going to be a drag. The doctors are going to fill out some paper work to submit to the government and they might cover the medication. Apparently they decide on a case by case basis so who knows what they will decide. Either way, Baden needs it so we will have to make it work.
Anyway, the next time I update this I hope my baby is upstairs sleeping in his crib at home.
Have a great day!
Joanne.
Sunday, March 20, 2005 7:58 PM CST
Hello,
I'm at the Ronald McDonald House for the night. Hopefully Baden will have a good night at the hospital, and there won't be any fevers. The doctor said today that if if doesn't have a fever between now and tomorrow he will still probably go home tomorrow. With that advise I stayed here for the night so that I can get Baden out tomorrow. I also have to clean our room at the Ronald Mconald House so that it is ready for another family. I'm really tired tonight. I think I will be going to bed as soon as I've typed this. Fred and I are both exhausted, both physically and emotionally. In one way I'll be glad for Baden to go home but in the other, I worry because I know deep down that there is still an issue that needs to be resolved. I guess we have no choice but to continue taking it a day at a time. I can't wait for the day when Baden is better.
Alison had a good birthday. We went out for pizza (her wish), and then we hung out at the Ronald McDonald HOuse. On Saturday we painted a window in the bone marrow transplant parent lounge window, and today we took her to Chuckie cheese. In addition to this she went twice to the hospital playground. All in all I think she had a great weekend. Tomorrow she is back to school after March break so I think she might be grumpy tomorrow. Oh well. We will still have a party with her friends and cousins when we get home so I think she will do well this year!
Sorry if the photos are big on this webpage. I'm not computer savvy, and I have to figure out how to make them smaller (this might take a while). Please bear with me. Thanks!
Anyway, that's it for today. If we do actually get out of hospital tomorrow I will update again.
Joanne.
Friday, March 18, 2005 8:13 PM CST
Hello
Why would Baden start making things easy for us now? Guess who has a fever? Baden will probably not be going home early next week now because he has a fever. You can just see it in his eyes, he is not that happy. The doctors sent a bunch of bloodwork away today for cultures to see if something is brewing. I can't believe it. Fred and I are pretty bummed about it, but what can we do? I think if we were given the opportunity we would sleep for about 20 hours straight. The way we've been living the last few weeks is pretty exhausting. Hopefully the mystery fever will just go away, and he will have a good weekend. At least I'm glad that I got to see him. I missed him alot after 12 days. Fred felt the same about Alison. He is so happy to see her again. As most of you know today is her 5th birthday. We tried to make the best of it for her. We got her a Polly Pocket, the game Hungry Hippos, and a DVD. She was really happy. She even said it was her best birthday ever! She loves it up here so I'm glad she was able to have a nice day. Anyway I'd better get back to the birthday girl.
Thanks for checking in to hear my grumbles!
Joanne.
Wednesday, March 16, 2005 5:01 PM CST
Hello to all of Baden's fans!
Do you like the new photo? I was at work today when a courier package was put on my desk. I wondered what it was so I opened it full of anticipation. It was a roll of new photos that Fred had developed of Baden. He sent them to me because I haven't seen Baden for 10 days so he thought the new photos might make me smile. Fred you are a sweetheart. The photos are all great. Baden looks pretty good. I can't believe how much Baden's appearance has changed since they put him back on steroids. Move over Jose Canseco here's Baden Klein! The photo at the top is of Baden with his bravery beads. He has over 20 full necklaces! I also added a couple of photos to the photo album page if you want to look. It was so hard to chose just a few because all of the photos were great. I hope you enjoy them!
Baden is doing really well. The doctor said that he might even go home on Monday! I'm so excited to see him. I hope that he can come home and stay healthy but only time will tell. I'm not really convinced that this episode is quite over yet but hopefully it won't be too much longer. Fred told me that Baden got a bag full of toys from the Cancer Angel network. I guess they give toys quarterly to all the kids in the bone marrow transplant ward. Fred says that Baden loves the new toys. I can't wait to go on the weekend and see what he got. Alison is going to be jealous. Mind you, it is Ali's birthday on Friday so I'm sure that she will do well too.
Anyway, I'd better go now. Thanks a million to Pat and Fred for looking after Baden!
Joanne.
Monday, March 14, 2005 6:39 AM CST
Hello!
I'm happy to say that Baden is doing really well. The doctors have said that he will likely be getting out of the hospital approximately give or take a day March 23. I'm so glad. I haven't seen him for over a week, and I really miss him. My cold is a lot better so I'm confident that I will be able to see him soon. In the meantime, Fred says that Baden is walking around his room holding on to the furniture. He is also talking up a storm. I have spoken to him over the phone a few times. He doesn't have a lot of words but he is starting to find his voice. I'm so excited about this because once he talks he will be able to tell me if and where he has an ouchy. No more guessing! Fred said that the nurses are totaling spoiling Baden. Since Baden can leave his room, Fred says that everytime he leaves the ward, when he comes back, Baden is sitting and playing at the nurse's station. Apparently the nurses found a new Barney video that Baden had not seen before so Baden was really happy.
Anyway, I have to go to work. Have a good day.
Joanne.
Friday, March 11, 2005 8:22 PM CST
Hello,
We spoke to the doctor today. He said that they still haven't decided about the g-tube. The staff doctors still have to discuss the issue with the head of the immunology department and the dieticians. There is a chance the g-tube won't happen while he is an in-patient but rather as a day surgery. I wish they would make their minds up.
As for the lung biopsy, the lung doctor said that if they do it while Baden has PCP and pnuemonia then they might not get an accurate result. They want to wait until the antibotics are done, and then give Baden a bit of time to recover before they even consider a lung biopsy. In the meantime, they might wean the steroids again, and if his grunting persists they will have to look at this again. All that I know is that rounds of steroids didn't help his grunting long term before so I'm not sure if it will make a difference now. It's a little frustrating.
As for Baden now, he is now the proud owner of a PIC line in his right arm. I am told that he is happy and playful and adorable. All the nurses love him. I'm just sad that I can't go and see him. This stupid cold is lingering. Alison is even worse than me. God I hope that her upcoming birthday during March break is not a repeat of Christmas. At Christmas, Baden was at Sick Kids, Alison was at my mom & dad's house, and Fred and I were sick with Norwalk Virus. Hopefully we will all be together for her birthday. Everyone keep your fingers crossed.
I haven't seen Fred since Monday morning. I really miss him. I really got used to waking up every morning to a cup of tea! Fred has been going to the hospital every night right from work, sleeping at the Ronald McDonald House and then going back to work. Needless to say he is exhausted today. I thought I had a bad day, but he truly has been amazing. Somehow tomorrow he has to drive home to get more clothes and food for Baden or I have to drive the stuff down to Toronto. I will have to wait and see how Alison is. Neither of us can go in the hospital right now so I'm not sure if that is an option. As much as I want to see Fred, I do not want him to catch this plague (as Kristin calls it!) that I have. I might just have to look at him through the glass door because we can't risk him getting sick.
Anyway, I'm tired and grumpy so I'm going to bed.
Good night everyone,
Joanne.
Wednesday, March 9, 2005 10:36 AM CST
Hello,
I am home sick from work with a cold. I feel rotten. The thing that bothers me the most about the cold is that I can't go see Baden while I'm sick. Most of the kids in the bone marrow transplant ward have compromised immune systems due to either their illness, the chemotherapy they have to take or their transplant. This means that I can't go near there with a 10 foot pole. I'm hoping for a miraculous cure by the weekend so that I can go up on Saturday or Sunday. If that doesn't happen I won't see Baden till the 17th. The 18th is Alison's 5th birthday so I guess we will have a little celebration at the Ronald McDonald House, and then eventually a party in Kitchener when Baden comes home. Alison thinks the prospect of 2 parties (one on her birthday and one at a later date) is cool. She is at a funny age right now because she suddenly wants EVERYTHING that is advertised on kids tv. I'm sure she will do well on her birthday!
As for Baden, when I phoned this morning, Pat was taking him for a walk. I'm glad that he is allowed out of his room. He loves going up and down on the elevator so he will enjoy that. The doctor phoned me yesterday and he said that he is waiting from the lung people to determine whether there will be a catscan and biopsy. In the meantime, they are going to put a PIC line in Baden's arm (a permanent IV), and he possibly will get a G Tube for feeding. For those of you reading this that don't know what that means, the PIC line will be attached to Baden's artery, and it will prevent him from having to keep getting poked for an IV. His viens are so scared and everytime he needs an IV he is poked about 4 times. His IVs don't last because his scars are so bad from all the pokes that he has had. The PIC line would just be put in short term until they don't need it anymore. The doctor said that Baden will need IV Pentamidine for at least 2 more weeks. I was initally upset when I heard about the PIC line but I'm okay with it now. It probably will be the best thing for Baden. As for the G tube, that is a feeding tube that goes right into his belly. In addition to eating he would be fed through the tube. We don't know if they are going to do this for sure and this is not the first time that they have considered it. Last fall we worked really hard getting Baden to eat so that he wouldn't have to have the G tube. The dietician from Sick Kids is going to call me about this later.
Part from these 2 things, I thing Baden is doing okay. Pat said that he is really happy. Apparently he has really rosy cheeks. I think that comes from my mom's side of the family. Anyway, thanks again to Pat for all her help! (And to Phil for letting Baden have her for a few days).
Lastly, I just wanted to remind everyone that by giving blood you can save a Sick Kid's life. Please consider it!
Thanks for checking in,
Love Jo.
p.s. Fred if you're reading this I love and miss you!
Monday, March 7, 2005 6:10 PM CST
Hi,
I came home from the hospital yesterday, and today I went back to work. It is really hard being away from Baden right now, but he is doing good (or I wouldn't have left!). He is doing well without oxygen, but he is still grunting, and he throws up occasionally. I'm assuming that the catscan will be any day, and then the lung biopsy. He is in real good spirits though. He now knows how to ring the bell for the nurse, and when the lady at the nurse's station asks if she can help over the loud speaker, he just keeps saying 'hello.' He is so cute, and he has everyone wrapped around his finger.
Alison was up in Toronto at the Ronald McDonald House on the weekend. I took her to the corner by Baden's window so that he could see her. He was really excited. Too bad he is 8 floors up so he looked really small. Alison always enjoys it up there anyway. She is the only one that ever wants to go to the hospital.
Big thanks to Pat for helping us out this week. I don't know what we would do without you!
Anyway, bye for now.
Joanne.
Friday, March 4, 2005 12:13 AM CST
Hello,
Just a quick update since I'm on my lunch break, and I have to move into the Ronald McDonald House today. Baden is doing really well today. At 11 am the doctors took him off the oxygen and he appears to be breathing reasonably well on his own. The doctor has now said that he will schedule the catscan. It will likely happen early next week.
Thankfully, the childlife specialist at the hospital found Baden a Wiggles DVD so I am getting a break from Barney(Yipee!).
Fred, Alison and Kim are coming up for the weekend so that will be nice. I am really looking forward to seeing Alison. She will be so excited to be here.
Anyway, I said it would be quick and I meant it!
TTFN, Jo.
Thursday, March 3, 2005 1:09 PM CST
Hi again,
First of all, thank you to everyone that has posted a message in the guestbook. It really means a lot to know that you care enough to take some time to see how we are doing. Please keep the messages coming, it makes me really happy!
Baden is very playful today. He wants out of the oxygen dome so I'm doing the best I can to help him with his oxygen so that he can have breaks. Baden still has PCP, and he is still throwing up a little, but his new developments are that he has a diaper rash (the first one for over a year!), and he has tested positive for another bacteria in his lungs. Basically his lungs have now got fluid (don't know why?), PCP, and pneumonia. The doctors still wonder if they is something else as well so early next week Baden will be getting another catscan. Apparently they don't want the catscan now because there would be too much risk to give Baden an anesthetic with his lungs being the way they are now.
Today is transplant day in the bone marrow ward. I just ate my lunch in the parent's room, and there is a lot of tension, stress, and hope in there. There are a lot of really great families here right now, and each ones story is really sad. Despite everything though we all had a great laugh over lunch. Laughter truly is the best medicine. Some of the families have those portable DVD players so I may get to borrow one and watch a movie. Baden insists that the tv in his room has to be Barney, and it is driving me a little crazy. Even when I went to sleep last night all I kept singing over and over in my head was 'Barney is a dinosaur in your imagination..." I think I'm going mad!
Anyway, I'd better go and see if Baden has woke up from his nap.
Love to everyone,
Joanne.
Wednesday, March 2, 2005 11:21 AM CST
Hello
Baden is doing reasonably well. He is constantly receiving oxygen. He has an oxygen dome sitting over his head. At times, he really hates it, but there's not much I can do except play with him, and let him watch Barney (over and over!). Thank God for the purple dinosaur, I couldn't get through this without him! When Baden is fed or bathed or dressed or weighed we have to remove him from the oxygen and his SATS (oxygen level in his blood) fall really quickly. To do those things we have to hold the oxygen up to his face. Hopefully the medication will kick in soon and he can be more mobile.
I came up to Sick Kids today, and I will stay until Sunday night. I haven't seen any of the doctors yet but from what Fred told me they think there may be something else in addition to the PCP happening inside Baden. I'm not sure if I believe this, but time will tell. I hope that there is nothing else. I can't wait to get Baden home from here. There are 4 SCIDS in the bone marrow transplant ward right now so the doctors are busy. I know that one of them is having their transplant tomorrow so the doctors will be busy. Even though Baden is a SCID the doctors said that his stay at the hospital this time is not related to SCID. At least that is a relief, the new bone marrow is still working.
Hugs and kisses to Alison if someone is reading this to you. Mommy misses you! Mommy loves you!
Joanne.
Monday, February 28, 2005 5:35 PM CST
Hello...We found out around 4:30 that Baden once again has pneumocystis carinii (PCP). This is the same illness he had when he was 4 months old. It was this illness that made the doctors decide to put him in the bone marrow transplant ward in the first place. PCP is a deadly form of pnuemonia that effects people with immune disorders such as SCID or HIV. It is called the 'silent' pneumonia because it can't be heard with a stethoscope which makes detection difficult. The only reason they know Baden has it is because of the procedure that they did last night. PCP is not caught from people, it is in dust or dirt, and most people have breathed it in, it's just that most immune systems can handle it. Anyway, Baden will be in 8B at Sick Kids for at least 2 weeks. The doctors don't know still if there is another underlying issue because of his grunting. Maybe he might be allergic to one of his drugs? Who knows. As for now he is constantly getting oxygen, and tonight the intensive care unit doctor is going to look at him in case they have to move him there.
As for me and Fred, though this is going to be a pain to manage work wise we are relieved that at least they finally know part of what is wrong. In the meantime, looks like we'll be moving back in to our time shares...Hospital for Sick Children, and Toronto Ronald McDonald House. (ha ha)
Thanks for checking in.
Joanne.
Sunday, February 27, 2005 10:26 PM CST
Hello
I've just got back from the hospital. I think I'm exhausted in everyway. We had an okay weekend with Baden. The doctors still do not know what is wrong. They did a nasal swab on Saturday but the results came back negative. Tonight they did a procedure on his lungs called a BAL. He got an anesthetic, and they put a camera into his lungs, filled it with saline water and drained it. They are hoping to use the water to test for any clues as to what is wrong with Baden. They said he might have a fever for 24 hours, and that his throat might be sore. He seemed okay when I left (or else I would not have left!). Tomorrow Pat is going to sit with Baden, Fred on Tuesday, and me for the rest of the week. The doctor said there is a chance Baden will go home at the end of the week. I do not want him discharged until they have figured this out. I don't want to go back again in a few weeks because it hasn't resolved and he is sick again. The doctor said that Baden will likely be on a high steroid dose again. This means he will be immune suppressed. Again we won't be able to expose him to sick people or children other than Alison. Alison will be broken hearted that her friends can't come over to play. I feel so bad for her. People may not realize this, but all of this really effects her as well.
Now that we are back in the bone marrow ward I realize I have a love/hate relationship with the hospital. I love that the kids spirits are mostly positive, and I love that the hospital is there for us with the best doctors in the world. I hate though the looks on the parents faces...the tired looks, the fear, the desperation. Everyone is desperate for their kid to live but sadly and that doesn't happen. Seeing the kids in transplant has really reminded me how lucky I am that Baden has done well. It's reminded me how lucky I am to have great kids and families. It reminds me to never give up, and always try to think positive. (And if I'm having a bad day, NEVER let Baden see my stress). The bone marrow ward is an amazing place filled with love, joy, happiness, fear, grief. I could go on forever. As I looked at the wall of the graduates of the bone marrow ward, and I saw Baden's pictures I was reminded of the kids we met that are now angels. I'm so glad I got to know them all, they taught me alot about strength, bravery, and courage.
Well I'm going to bed now but I need to give a few thanks before I go. Thanks Kim for having Ali all weekend. We really appreciate it. You are always there for us. She really loves you (and so do we!). Thanks Kris for helping us with Ali during the week. We really appreciate that you are there for us. We owe you. Thanks to Arlene for giving us a place to stay near the hospital on Saturday night. Your bed is WAY better than the cot at the hospital. Thanks to Pat for helping us out again this week at the hospital. We couldn't do this without you. Thanks to all our friends and family for your support.
Last thing...since I was in the bone marrow ward I was reminded how important blood donation is. Please give blood. You can save a life. Baden has had over 200 blood transfusions. He would not have lived without it. There are lots of little Baden's out there, please help if you can.
Thanks for checking in. I will try to update as soon as I know the test results.
Lots of love, Jo.
Friday, February 25, 2005 5:56 PM CST
Hello,
Baden needs lots of prayers today. Tonight he was readmitted to Sick Children's Hospital bone marrow transplant ward. We are so stressed out. The doctors do not know what is wrong, but it all appears to going back to the problems that started in December. Today started as a clinic day. Fred took Baden, and I went to work. At one point Fred phoned and said that the doctors were pleased with Baden. Then Baden went for an echo and they said that the fluid was about the same as the last echo (which is half what it was at Christmas). The doctors then did a XRay, and it was worse than his last XRay. When they took his sats they were only 90. Since everytime he is admitted he catches some type of virus the doctors didn't want Baden on the 7th floor so thankfully there was an available room in bone marrow transplant. Ironically it is just 2 rooms down from where we spent 6 months in 2003. The plan for now is that respitory is going to see him. He currently has an oxygen mask on and Fred says he hates it! We don't know if it is a virus, or a drug reaction, or the most dreaded of all...graft vs host disease. I think the plan is a catscan and a lung biopsy so we'll have to wait and see.
Fred took a family day off work today, and I will likely have to miss work a few days next week so I hope that goes down well. They understand my sitution so it should be okay. I was just leaving work today when Fred phoned me to tell me the news so thankfully I didn't 'lose it' in the office, I was able to get to my car before the river came. I am so tired of this. I just want Baden to get better. It seems that so many of the families that I know through Caring Bridge are having a tough time right now. Please everyone pray for all these sick kids. They should be at school and out playing, not fighting for illnesses. Never take good health for granted.
Anyway, I'm exhausted so I have to end this. I will try and update again when I can.
Love, Jo.
Friday, February 18, 2005 10:56 PM CST
Hello again,
Nothing too new to report this week. I survived my first full week back at work, and I'm now exhausted and looking forward to the weekend.
Baden went to Grand River Hospital for a check up and blood work. Kristin took him for us. The doctor also sent him for a chest x-ray because even though his bowel problem has improved he is still grunting. The doctors had hoped that the grunting would go away once his bowel was better. I didn't hear back from the doctor so I assume it was a good x-ray result. They usually only call when it's bad news. Anyway, thanks to Kristin for taking him to what should have been an hour appointment but ended up being 3.5 hours.
As for his eating, I'm happy to say that it hasn't been as bad as I thought it would. I made him some sweet potatoes, squash, and green beans and he ate the lot. He also had some minced spagetti and sweet & sour chicken with rice that I made. I'm feeling like a real 'Super Mom' because this is such an accomplishment for Baden. It's amazing how when he is good, we are all good.
Anyway, Baden is back to Sick Kids next Friday for SCIDS clinic, and then the following Wednesday for cardiology clinic. Lets all keep our fingers crossed for good results at that one.
Thanks for checking in.
Joanne.
Friday, February 11, 2005 9:50 PM CST
Hi Everyone...Thanks for checking in!
First I want to thank my brother Keith for taking Baden to the hospital today. I started back to work yesterday after a 2 year leave of absence so this is the first appointment at Sick Kids that I have not been at. Thanks Keith for offering, and making things a little easier and a little less stressful. Also, thanks to my neice Kristin for looking after Lucy, Abigail and Alison so that Keith could go. You guys are great!
The doctors were pretty happy with Baden today. I spoke to the doctor by phone and they are reducing his steroids so this may help with his blood pressure problem. They are happy with how the wound is healing under his arm, and they were glad that is belly is a little smaller. Their only concern is with his diet. To give a little history, last fall the doctor's threatened that they were going to put a 'g' tube in Baden if he didn't gain weight in a 4 week period. Baden was put on a high calorie diet which included homo milk with cream added, and high calorie Minigo yogurts. At the time Baden didn't want this food so Fred and I worked really hard with the help of dieticians to encourage (actually more like force!) Baden to eat. Anyway after 4 weeks he had gained sufficient weight and the doctor's said they wouldn't do the 'g' tube for now. As soon as Baden started this high calorie diet he started being constipated. Then in December he got sick with the fluid on his heart, and we had another setback. Anyway, now Baden is back on steroids his appetite has picked up a little. The doctor's are now saying that if he continues with this high calorie dairy filled diet he will have problems in his bowels when he is about 4 years old. So now the doctors are saying only 2 cups of milk a day, 2 other drinks of either juice or water, and he must start eating blended versions of what we are eating. From a food standpoint the doctors say Baden is about a 9 month to 1 year old in his development. Here comes the big problem. Baden loves milk, and only milk. If we try to offer him anything else he freaks out. The dietician says that it will be like breaking an addiction but we can't give him the milk or he will never learn to eat a balanced diet. I understand what they are saying but it is so frustrating/ worrying to see him so upset. I feel like they told us to do this horrible high calorie diet and now they are saying to stop it. If he doesn't eat because he doesn't like or want the new food he'll end up with a 'g' tube anyway so all of our hard work will have been for nothing. Anyway, please let us find the patience to deal with this! At least these are minor problems compared to what he has already faced.
Thanks for visiting!
Joanne.
Tuesday, February 8, 2005 9:54 PM CST
Hello!
Well Baden is now a 2 year old. His birthday was great. Thanks to everyone that sent their best wishes. I am so proud of him. In case anyone doesn't know, I think he is the best little boy in the world and I wouldn't trade him for anything! You should hear him saying 'mama' and 'daddy.' It is so cute. Music to our ears.
I had a really busy day today. Baden's nurse came this morning to change the dressing and pack the infection under his armpit. It is where the hospital recently removed 2 lymphnodes. The stitches got infected and we are now trying to get it to heal from the inside to the outside so that it won't continually get infected. Since being back on prednisone Baden has once again developed a blood pressure problem. For the last few days his blood pressure has been 116 to 145 which is really high for him. (It should be around 80). I am giving him extra blood pressure medication when needed and it works pretty fast so that is good. After the nurse left we went for an appointment at Baden's doctor. I updated her on his recent medical issues, and she decided to send him for bloodwork and 4 X-Rays at our local hospital. That made for an afternoon of waiting around. Then at 4pm I had to drive Baden to a physiotherapy appointment. He has had some issues lately. Everytime he ends up in the hospital his physical development takes 2 steps back. Now I have a program to help encourage him to crawl more, stand on his own, and eventually walk. Anyway, it doesn't sound like much on this journal entry but with taking and picking up Alison at school, taking Baden's blood pressure numerous times, 2 trips to the pharmacy and phoning our local doctor and Sick Kids Hospital I was pretty much running ragged for 9 hours straight. Other Moms and Dads with sick children will know what I mean. It just becomes a way of life. I am looking forward to relaxing tomorrow. Tomorrow is my last day before returning to work after a 2 year absense so I plan on enjoying it, and cuddling the kids as much as possible. Anyway I'm not complaining about my busy day. As long as Baden is okay I'd do anything. Baden is going to Sick Kids Hospital on Friday so I will try to update again then.
Bye,
Joanne.
Friday, February 4, 2005 7:22 PM CST
I have been thinking about doing a Caring Bridge page for a while because people are always asking me how Baden is. I didn't because I thought he was cured and the need wouldn't be there. As many kids do though, Baden keeps having 'bumps in the road'in his treatment. Today I was talking to another mom at the hospital and she encouraged me to finally do this. Hopefully I can put updates on this page and all of my family and friends around the world will be able to check in on us.
I can't believe that Baden will be 2 on Sunday! I love birthdays. He has fought so hard just to be here so it makes it extra special. Last year we had just got home from the hospital from his bone marrow transplant so it was a quiet birthday as he couldn't be exposed to other people much. This year it will be similar since he is back on immune suppression. In the last 2 months he has had fluid on his heart, and in his lungs. The doctors have done bone marrow aspirates, lung biopsys, removed 2 lymphnodes, catscans, and what feels like zillions of blood tests, x-rays, echos, and ultrasounds and they can't find anything wrong. They are now suspecting Graft versus Host Disease though they can't say for sure. It is really frustrating. Baden is grunting all the time, and appears uncomfortable. If you asked Baden though he would say his biggest problem is that he can't go poo. Poor boy! Anyway he seems pretty happy today. We have to go back to Sick Kids on Friday.
Thanks for checking in on us!
Joanne
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