Chase had a Great Thanksgiving Weekend!

We had Thanksgiving at our place, since it’s really difficult to transport Chase anywhere. We ended up with a house full of guests (about 20 of us altogether), many of whom stayed with us for a couple of days. This meant that Chase had a lot of his cousins around, which he really seemed to enjoy. They talked to him, watched movies with him, and we all prayed over him which we know lifted his spirits.

We had the best weather in Detroit on Thanksgiving that we can ever remember. It was really warm and sunny, so we took advantage of the opportunity to take the nephews and nieces to the big parade and other downtown attractions. Unfortunately, Chase couldn’t join us for this, but we had another big milestone with him. We actually took Chase out in his new wheelchair around the neighborhood and to see the new park that is under construction across the street. We told him that as soon as he’s better, the park should be ready for us to fly kites and have play dates. We know he really enjoyed himself the entire weekend.

Chase’s breathing continues to improve each day - he’s triggering his own breathing full-time and we’re making great progress at reducing the amount of pressure support that he needs. He seems to be gaining more strength in his lungs every day, which we can clearly measure. Chase is also moving his upper body more and more – sometimes on command. He’s working on trying to open his eyes – we know he can “see” us energetically, but it would be great for him to respond with his eyes. We’re praying that this is the next step in our miracle.

The next prayer service will be held on Sunday, Dec 3rd at 3 pm in the social hall of St. Anastasia church,
4571 John R. Road in Troy. This is for all our sick children for our families and world peace. For more information or special prayer requests please contact Meg Koss 248-828-4419.

We truly appreciate all the prayers and support for Chase and our whole family.

God Bless!!

John & Carol Sammut
Chase & Barbara

Happy Thanksgiving!

Despite Chase’s current status, we feel there’s a lot to be grateful for this Thanksgiving. First and foremost, he’s still with us. That’s a lot more than we were told to expect over 15 months ago. In addition, he’s been extremely stable lately, which is a real relief on the nerves lately. Chase is also showing many more signs of gradual improvement – we’ll take any pace of change at this point, as long as it’s moving in the right direction. Lately he’s been moving more with his trunk, head and limbs – sometimes on command and other times it seems like he’s just stretching and getting ready to wake up. He’s also been coughing a bit and even gagged yesterday (which is a reflex that he completely lost until recently). We’ve also continually been able to find ways of connecting and communicating with Chase (however crude) which always keeps all of our spirits up and I’m sure pleases him as well.

The outcome of our recent debacle with Protective Services was positive (complete vindication) and we’re continuing our pursuit of exposing the situation to bring attention to the need for change. Your support in this regard is extremely helpful – we’ve heard back from Child Protective Services as well as Henry Ford Hospital. However, we feel they’re still ducking the real issue – that the complaint was NOT in the best interest of our children (motivated by personal agendas) and that it was full of misrepresentations and distortions. We’re continuing to seek answers / further investigation and we’ll keep you posted. Keep up the expressions of support – they’re getting noticed (we also know that Chase’s blog is being monitored daily by people other than Prayer Warriors – so be it).

We hope all of Chase’s Prayer Warriors have a wonderful Thanksgiving. Above all, we’re thankful for your faithful support of our family throughout this challenge.

God Bless!

John & Carol
Chase & Barbara Ann

Chase and Child Protective Services

On October 4, 2006 Chase was removed from his home with no prior notice by a police escort.

Chase's police-escorted ride to the hospital in an amblance was in response to a complaint made to Child Protective Services (CPS) by Dr. Jeanne G. Lewandowski of Henry Ford Kaleidoscope Kids Hospice Services.

The three videos below were broadcast on WDIV, an NBC news affiliate in Detroit. Click the Play button on the images to watch the videos.

Fight Over Chase
October 5, 2006

The Battle for Chase
November 15, 2006

A Family's Ordeal
November 16, 2006

The antineoplaston therapy mentioned in the complaint filed by Henry Ford Hospice Services currently has 14 FDA-approved clinical trials in progress.

John and Carol Sammut are asking for your support in requesting an investigation into this incident, to prevent similar unjustified action from being taken in the future against other families in crisis.

John's states in his blog entry dated November 21,

The complaint that was filed by Dr. Jeanne Lewandowski from Hospice of Henry Ford’s Kaleidoscope program was so full of misrepresentations and distortions (to put it mildly) that it appears to be intentionally fraudulent. Once again, we are willing to give Protective Services and Henry Ford Hospital the benefit of the doubt, assuming they provide a reasonable response and correct the injustice that occurred in their system. Anything short of that and we’ll be forced to pursue recourse, just to ensure that this outrageous misuse of the system doesn’t continue.

Your indication of support and request for an investigation to both organizations will help to expose the issue(s) and hopefully elicit cooperation.

Contact information for the parties involved:

• Dr. Jeanne G. Lewandowski, MD
  Henry Ford Kaleidoscope Kids
  (313) 874-6400
• Sue Wise
  Michigan Child Protective Services
  (248) 975-5645
  wises2@michigan.gov

Link to View Chase’s News Story

The news stories that aired last week about Chase and our recent battle with Protective Services were pretty favorable. Click here to view the most recent stories from last week.

We still haven’t received a valid explanation or the results of the investigation that the agency indicated would be conducted, so we intend to remain vigilant in our effort to prevent this kind of injustice from occurring again to other families in our situation.

We specifically indicated to the State of Michigan Department of Human Services that we weren’t intending to be litigious in our request for a follow-up investigation, just seeking answers to expose the medical practitioner who filed the complaint. However, after reading the transcript from the emergency trial that led to a court order being issued for the removal of our children, we are reconsidering.

The complaint that was filed by Dr. Jeanne Lewandowski from Hospice of Henry Ford’s Kaleidoscope program was so full of misrepresentations and distortions (to put it mildly) that it appears to be intentionally fraudulent. Once again, we are willing to give Protective Services and Henry Ford Hospital the benefit of the doubt, assuming they provide a reasonable response and correct the injustice that occurred in their system. Anything short of that and we’ll be forced to pursue recourse, just to ensure that this outrageous misuse of the system doesn’t continue.

Your indication of support and request for an investigation to both organizations will help to expose the issue(s) and hopefully elicit cooperation.

Contact information for Jeanne Lewandowski of Henry Ford Hospice and Sue Wise of Child Protective Services can be found here.

Our next step is to elevate the issue within both organizations, Henry Ford Hospital and the State of Michigan Department of Human Services, with our expectations for the results of the investigation.

Please forward this link to all of the Prayer Warriors as additional background on Chase’s case. Please also request that any Prayer Warriors who don’t currently receive the updates directly via e-mail, sign up on the mailing list by clicking on this option from right margin on Chase’s blog. It’s pretty easy to do and this will ensure that they receive the updates going forward.

We truly appreciate all the help and support, particularly with this recent infuriating challenge. All of your prayers are making a huge difference in Chase’s recovery. His breathing is continuing to improve every day – he’s virtually off the ventilator breathing 24/7 now and we’re continuing to slowly reduce the amount of pressure support that he needs. At this rate, it shouldn’t be long before he can be completely independent from the vent – hopefully by the holidays. This will be a great milestone in his continued recovery. Of course, the best vindication for the challenges we’ve overcome is Chase’s improvements – we’re keeping the faith with all your support and expecting our miracle to continue unfolding before our eyes.

God Bless!

John & Carol Sammut
Chase & Barbara Ann

The Schedule for Chase’s Story on the News has been Changed

I just got an update from Channel 4 News to confirm that Chase’s story is going to run, but has been moved to Wed (11/15) during the 11 pm News. They are also planning to air an additional follow-up story (based upon their investigation) on the following day (Thurs 11/16) at 6 pm.

For those in the Detroit area, please spread the word to other Prayer Warriors and supporters. Expressing your feedback after this story airs is important to ensure that Protective Services understands our concerns and reviews / corrects their practices.

We’ll do what we can to obtain and circulate a link from the station’s archive (if it’s available) after the story is aired. Thanks again for all your support.

God Bless!

John & Carol
Chase & Barbara Ann

Chase’s Story will be on the Local News Again

The follow-up interview and investigation from our encounter with Social Services is going to be broadcasted on the local Channel 4 news at 11 pm on Monday night (Nov 13th). Apparently, after the first coverage, they got a lot of inquiries (mostly outraged citizens), so they conducted an investigation and another interview with us. We’re looking forward to the additional coverage, since they did a great job last time which resulted in even more support and Prayer Warriors for Chase.

After it’s aired, we’ll try to get a link from their archive and forward it for those who aren’t local; however, the last time their link was only active for a day or so. We invite all those who feel as strongly as we did about the misuse of taxpayer funds and Circuit Court resources to voice your concerns. While we’re not seeking retribution in any way (there is no counter suit on our behalf), and we’re not trying to be vindictive, we just want to prevent this kind of injustice from happening to other parents who pursue alternative therapies, particularly in cases where conventional medicine doesn’t have a cure. We realize that there are appropriate situations for Social Services to be brought in; however, they should be required to conduct a reasonable amount of investigation and diligence before being given a court order to take custody of children (especially when a child’s condition is fragile).

On a bright note, Chase is continuing to do great – Praise the Lord. He’s now had 5 days straight of breathing on his own (with pressure support from the vent). His vitals remain extremely stable and we’re slowly backing off the amount of pressure support required. As he continues to improve and gain strength, he’ll eventually be completely off the vent – God willing. We also had a good initial session using a brain-computer-interface to map his brainwaves and we’re encouraged that it could help with stimulating improvements in his motor skills as well as responsiveness. Any ability to communicate consistently would make a huge difference in lifting our spirits, as well as Chase’s. The best news was that the Neurofeedback practitioner was able to detect fairly normal brainwave activity on a portion of Chase’s head – another confirmation that the assessment done at the hospital was invalid (as we strongly suspected), or at least incorrectly interpreted.

Thanks again to all the Prayer Warriors for remaining vigilant with us in this battle. We’re keeping the faith and believing that our miracle is continuing to unfold in Divine Order.

God Bless!

John & Carol
Chase & Barbara Ann

Chase’s Breathing Improvement is Incredible

First of all, we’d like to thank everyone who joined us at the prayer service (in person or in spirit). It was really uplifting for our whole family, especially Chase. We truly appreciate all the support and prayers - we have no doubt that it’s making a huge difference in Chase’s recovery, as evidenced by his most recent improvements.

Over the past few days, Chase has continued to increase the amount of time that he’s been able to trigger his own breathing using the pressure support on our ventilator. We just hit a huge new milestone – Chase has gone 24 hours with this mode (with a few short breaks for breathing treatments to ensure his lungs remain clear). We’re ecstatic to say the least, although we were a bit tenuous on whether or not to let him keep going through the night. After talking it over with our Respiratory Therapist, he encouraged this as the next step in our progress, as long as we have fail safe measures in place (monitoring, automatic default of the vent, etc.). So we went ahead and did it last night and Chase pulled through with flying colors (no alarms triggered at all) – Alleluia, Praise the Lord!

The next step toward independence from the vent will be gradually reducing the amount of pressure support that Chase needs to maintain his oxygen saturation levels. We’ll be slowly reducing this during the day and increasing again at night to ensure that he sleeps deeply without any distress from the breathing.

We’ll be seeing the Neurosurgeon again tonight – I’m sure he’ll be interested to hear about this latest development to further support our conviction that Chase is certainly improving, despite their pessimistic outlook. The evidence is becoming overwhelming to the point that they will not be able to refute it any longer. We’re also researching the possible use of brain-computer-interface tools that will enable us to potentially communicate with Chase, or interpret his brain waves (so much for their contention that he was “brain dead”). This is very excited technology that could come in handy while we’re working through the next phase of his recovery.

Thanks again to all the Prayer Warriors for remaining vigilant with us in this battle. Chase is continuing to make us proud with his incredible determination to fight through these challenges.

God Bless!

John & Carol
Chase & Barbara Ann

Chase is Stable enough for us to Move Him Around

Over the past week, Chase’s vitals have been so stable that we’ve decided to start moving him around again. We started by transferring him to the family room, which enables him to get much more sunlight and to watch cartoons on the big TV. Chase used to love this and we’re hoping it helps to keep his spirits up. We’ve been doing this daily for a few hours and it’s going well.

Yesterday, we got the courage up to use his wheel chair for the first time. It’s actually a loaner from U of M, while we wait for the custom one that was ordered for Chase’s exact dimensions. The loaner worked out pretty good, once we figured out the various features and we were able to get Chase out on the deck for a couple of hours while we carved pumpkins. We had a great time and it was just therapeutic for all of us to be able to include Chase in a family function.

The Neurosurgeon came by again last night to drain the excess fluid from the shunt and he seems to be coming around in terms of acknowledging the fact that Chase is responding well. It’s hard to overlook his ability to trigger his own breathing throughout the day (he’s up to 8-10 hrs almost every day) and the fact that he continues to respond to our questions with leg movements. Chase’s spirits seem to be up as we find more ways to get him around and interact more with him. We’re anxiously awaiting every slight improvement to confirm that he has in fact turned the corner and on his way to complete recovery.

We’re looking forward to the upcoming monthly prayer service on November 5th, at 3 pm at the chapel of Holy Name Parish located at 630 Harmon St. in Birmingham, MI 48009. Please help us to spread the word so we can continue the momentum with Chase’s recovery. All your prayers are making a huge difference and we have no doubt they’re the main reason that Chase is still with us and winning his battle with this terrible disease. Thanks again!

God Bless!

John & Carol
Chase & Barbara Ann