Happy B-Day Carol

Well, since it’s been over a year that Chase has been fighting this challenge, this is the second birthday that Carol is celebrating while pre-occupied with Chase’s condition. Needless to say, she’s been “through the ringer” a few times but fortunately, she’s keeping her spirits up, as well as Chase’s. Even now in his fairly unresponsive state, Carol is more effective than me at taking care of his needs. Every time we run into a tough situation with the ventilator and I’ve been struggling for an hour or so trying to get his saturation up, suctioning out whatever seems to be blocking his airway, etc. my last resort is to call in Carol to sit behind Chase and just hold him for a while. It works every time – his saturation goes right up, his heart rate stabilizes, etc. as if he’s communicating, “that’s just what I wanted mom”...

I’m not taking it personally this time – I’ll never have her connection with Chase, but I’m just glad to have her help in those situations and throughout this whole ordeal. Although Carol has had a few tough spots along this road, for the most part she’s been extremely uplifting for our whole family and the main reason we haven’t “cracked” yet. We’re still believing that Chase is effectively “turning the corner”, but he’s just getting the deep rest that he needs for his body to repair. Along the way, it seems that his favorite thing to do these days is just to cuddle and snuggle with Carol – I guess he’ll always be a momma’s boy...

Barbara and I picked out a special momento for Carol on behalf of Chase and celebrated her B-day on his bed while she opened the presents – we know he hears us and wants to remain “connected” with what’s going on. His latest struggle in terms of having the energy to get going again is a seriously low hemoglobin level (6.5 in today’s blood work). We believe a big contributor to this problem is a long-term side effect of the steroids that we just never got Chase completely off – it’s been a necessary evil for a long time, trying to reduce any possible swelling or other symptoms. He’s down to a low dose again and we’re finally going to make the switch back to a much milder version (Cortef) that we’re hoping will enable his adrenal glands to get repaired. In the meantime, we may have to do a transfusion at home to get a quick boost in his hemoglobin and energy level.

We had a good weekend reading books on Padre Pio and watching documentaries. We managed to find about a dozen movies and we watched most of them already. The more we learn about his life, the more amazed we are about having a saint like that who lived in our era. We have no doubt that he is praying with us and for us – the signs that he’s given us have inspired us along the way to keep on going during the most difficult moments along the way. Anyone interested in getting more info on Padre Pio, just let us know and we’ll forward some things. We’ll also have some of his info available at the prayer service this Sunday at 3 pm at the chapel of Holy Name at 630 Harmon St. in Birmingham, MI 48009.

As regularly scheduled, we also plan to pray collectively tonight at 9 pm EST for the miracle of Chase’s return to Divine Health. Thanks again for lifting Chase in prayer and helping us to keep the faith. Please say an extra prayer for Carol on her B-day to continue doing a great job with an extremely difficult challenge.

Thanks and God Bless!!

John & Carol Sammut
Chase & Barbara

Keeping the Faith and Believing in Miracles

Chase is continuing to hang in there, with relatively stable vitals over the past few days. We have had some scary moments here and there, particularly when his oxygen saturation drops and we have to figure out why (needing suctioning, mucus plug, some obstruction, etc.). Fortunately, we’ve had good training and support which is really paying off. Usually, we’re able to deal with the situation ourselves, sometimes with some guidance over the phone. We are so glad to not have to deal with the hospital during these situations – we’re all better off, particularly Chase.

Despite Chase’s difficult condition, we’re doing our best to keep the faith, expecting to ultimately be rewarded for witnessing to Jesus’ infinite mercy. We continue to get renewed strength from the support we receive from Chase’s Prayer Warriors, including the relative of St. Pio. Reading about the story of Padre Pio, who is saint from our era, is extremely inspiring. Some of his most profound counsels include:

• "Pray, hope, and don't worry. Worry is useless. God is merciful and will hear your prayer. Prayer is the best weapon we have; it is the key to God's heart. You must speak to Jesus not only with your lips, but with your heart; in fact, on certain occasions, you should speak to Him only with your heart."

• "Do not tire yourself over things that cause anxiety, preoccupation and worry. Only one thing is necessary: to lift up your spirit and love God."

• "God provides for our transformation and growth; you give over your sufferings to the embrace of God and you will be given peace; you hand over your feelings of anguish and despair and you will find hope rising in your heart."

• "Walk cheerfully and with a sincere and open heart as much as you can, and when you cannot always maintain this holy joy, at least do not lose heart or your trust in God"

• "Be careful never to become discouraged when you are surrounded by difficulty or infirmity. If you are experiencing some weakness, God is not abandoning you, but offering you the opportunity to grow in humility and gratitude."

• And my personal favorite: "Be cheerful. Jesus will take care of everything. Let us pay no attention to people who do not know what they are talking about. Let us trust in Jesus and our heavenly Mother, and everything will work out well."

We hope you get as much of a lift from these words of advice from Padre Pio as we do. The feast day of his canonization as a saint is coming up – Sept. 23rd. We’ll be attending mass that day, which is being said for our petitions to heal Chase. As regularly scheduled, we will plan to pray collectively tomorrow (Thurs) at 12 noon EST for the miracle of Chase’s return to Divine Health.

We are also planning another prayer service on the first Sunday of the month – October 1st at 3:00 pm at the chapel of Holy Name at 630 Harmon St. in Birmingham, MI 48009; tel: (248) 646-2244. Please pass the word – anyone is welcome to join us (although this is a Catholic church, it will be a non-denominational service). Thanks again for lifting Chase in prayer and helping us to keep the faith.

God Bless!!

John & Carol Sammut
Chase & Barbara

Chase's Spirits were Lifted Today by Another Awesome Prayer Service after an Extremely Stessful Week

This past week was another roller-coaster ride for Chase - unfortunately, not the fun kind. After the recent neurological changes, we've been told by the Burzynski Clinic that we need to stop treatments for a while until he has a higher score on a physical that is required by their FDA protocol. Since their treatment is high in sodium, stopping this threw Chase's electrolytes terribly out of balance (sort of a "rebound effect"). His sodium level got so low by Wed morning (118) that we were told by his Neurologist it would've put a healthy person in ER and most likely into a coma. We had to react quickly to pull it up and we found a product to do just that - Himalayan salt that is reportedly high in other minerals and good for his body.

Well, it certainly worked, but along this pulling his sodium back up (this time to the high end of the normal range), his Potassium also skyrocketed to 7.2 - this is way beyond the "safe zone" and typically would require emergency hospitalization. Once again, we jumped on it and adjusted his nutrition quickly with frequent monitoring (4 tests over the following 24 hours) until this got back in line as well. All of these swings clearly took a toll on Chase's body and by the end of the week, although his electrolytes were balanced again, his hemoglobin dropped significantly (7.8), most likely because of a combination of all the blood draws and giving him limited nutrition while we were working on the e-lytes.

Finally, we started getting concerned that Chase's digestive track and his bowels were really sluggish, with the obvious related concerns that this could be an indication of his bodily systems shutting down. Fortunately, Chase did have a bowel movement last night which alleviated a lot of our concerns (at least for now), but he's definitely very depleted at the moment. We're adjusting all of his meals and supplements with the help of our nutritionist to create a "low residue diet" so that it will be a lot easier on his digestive track for the near term and hopefully he'll be back on track soon.

With all of this going on over the past few days, we've been extremely depleted ourselves with concerns about the underlying implications regarding Chase's status and outlook. However, he never ceases to amaze us - he's just such a fighter and every time we hit a speedbump, he seems to get over it and then stabilize again. At the moment, his vitals are all stable and he seems to be hanging in there once again. We're certain it has a lot to do with the awesome prayer service that was held this afternoon. I'm terribly sorry for not getting the word out on the blog in advance - this was a pretty spontaneous event that was completely planned and organized by Kay Ponicall, Kathleen Lesnau and several of their friends. I only heard about the idea yesterday and expected perhaps a few people to come by for prayers but it turned out to be the most beautiful service we could've imagined. Around 150 people showed up and completely surrounded our house united in prayer and song for a couple of hours to lift Chase up to God in an effort to invoke His miraculous healing power. We were so incredibly moved by this overwhelming support that it's hard to express our gratitude in words.

Chase has obviously touched the lives of many people and he is accepting his mission of calling us all to strengthen and deeping our faith. He's our little angel - regardless of the final outcome, I feel he has saved my life by renewing my faith and spiritual calling, as well as countless others. There is no doubt that God is hearing our prayers and if it is His will, Chase will be healed. Fortunately, there is no order of magnitude in miracles, because we clearly need a big one to get Chase back to divine health. We're holding on to our hope and faith that this will happen and that we are being rewarded for our perseverence.

Thanks again to everyone who participated in the prayer service today. We were deeply moved and incredibly lifted by this show of support. Our normally scheduled collective prayer time is once again Monday evening at 9 pm EST. We are continuing to pray for Chase's miracle recovery as well as the wisdom and guidance to know and accept God's will for us in this situation.

God Bless!

John & Carol Sammut
Chase & Barbara

Praise the Lord for His Infinite Mercy on 9/11

Chase is coming along as well as we could hope after being discharged with the expectation from conventional doctors that he wouldn’t improve. We’ve received excellent support from the home Respiratory Therapist and with his guidance, we’ve been able to keep Chase very stable. He’s breathing on his own, for the most part, with the with the help of the vent at night and whenever his vitals get a bit distressed. The RT is extremely impressed with Chase’s strength and perseverance – he just keeps bouncing back.

With all of this support and stability for Chase, he’s getting the right kind of rest and starting to respond a little bit more each day (still very limited, with movements of toes, arms and shoulders stretching regularly and occasional movement of his head from side to side). He does open his eyes for periods of time, which we take advantage of to read him stories and engage him in understanding that his body is using the deep rest to repair itself.

We are very grateful for this opportunity to administer to Chase’s needs at home and get him back on the road to recovery. We continue to receive more affirmations that our prayers are being heard and that we are receiving Divine Intervention and graces to support our whole family. We’re certain it is related to the innumerable Prayer Warriors who are holding Chase in the light and remaining vigilant in this collective intention for his healing miracle.

During our regularly scheduled group prayer tonight at 9 pm, we will be thanking the Lord for his Infinite Mercy on our family as well as all of the families affected by the tragedy of 9/11. We truly appreciate your continuous support throughout this challenge and we’re keeping the faith.

Love and gratitude,

John & Carol
Chase & Barbara Ann

Chase's Prayer Service was just Amazing

Sorry for the long delay in posting an update. We had a very busy weekend, adjusting to our new ventilation equipment and all of the supporting monitoring systems. Getting the right settings in place as well as the tolerances on the alarms has been a really trying process. Several nights have been interrupted with various “nuisance alarms” that required us to get familiar with the features of the machine and how to adjust them so that we’re getting the right kind of support and notifications. It’s starting to get easier and we’re definitely seeing the benefits in terms of Chase’s rest and his vitals – his heart rate has been consistently lowering into the “safe” range at night, along with his respirations and he’s been maintaining high O2 saturation levels. These are things that we weren’t taking seriously enough after Chase’s tracheotomy in June and now, with the help of a home ventilator and a good respiratory therapist, we’re much better prepared to help Chase’s body get the rest and healing that it needs. In hindsight, it’s miraculous that Chase got this far without the kind of support that we should’ve had in place and without the knowledge that we’ve recently gained. We’re just continually counting our blessings and conveying our gratitude for the graces that we’ve received thus far.

The prayer service this past Sunday was just amazing – it really moved and lifted us along our journey. Thanks to all who attended in person and in spirit. The service was beautiful and extremely meaningful to us, particularly given the messages that were sent to us by the visionary (Gianna) who receives daily apparitions from Our Lady of Emmetsburgh. I am uploading the messages to a file on the Yahoo sight for anyone who is interested in reading them – we found them to be very profound and inspiring. We also plan to hold another prayer service like this one on the first Sunday of the month at 3 pm. We’re working on plans to find a convenient location for October, since Meg will be on traveling.

Although Chase’s vital signs have been relatively stable, he’s still not very responsive – some days more than others. During our routine blood work today, we discovered that his sodium was extremely low and this could be the cause of his recent issues (over the past 2 days he’s been less responsive again). We’re addressing the concern and praying that he’ll be better tomorrow and continue back on his climb up the tall mountain to a full recovery. Please join us with this intention tomorrow (Thursday) at 12:00 noon EST for 10-15 minutes of prayer with this intention followed by gratitude for the fact that Chase is still with us. In terms of the visualizations, we’re keeping it simple at the moment and after our prayers we’re just visualizing him in a completely healthy state as we praise the Lord for helping us get this far and hearing our prayers.

Thanks again for all the prayers and for joining us in this long journey that has been a true test of faith. We believe that there is a much bigger plan in all of this and that our Prayer Warriors are proving to be up for the challenge and passing the test! God Bless!!

John & Carol Sammut
Chase & Barbara