Chase had a very Memorable 6th Birthday

Well, Chase managed to hang in there during his Birthday party last Friday, although he wasn’t as much in the spirit as we had hoped. It’s easy to understand with all his symptoms and limitations at the moment. The part that really seemed to get him down was one of his perpetual favorites – the piñata. He just didn’t want to participate since he couldn’t use his right hand to hit it and couldn’t stand on his own. We’re not sure how much of this is due to frustration or just embarrassment in front of his friends and classmates. Anyhow, he eventually got over it and did enjoy the movie – Over the Hedge. It was a hit with all the kids and made us realize that this is probably a good outlet or distraction for Chase to forget about things for a while – we’ll probably be taking him to the theatre more often.

Then on his Birthday yesterday, we took him to school to bring cupcakes to his class, which was a big hit. He really enjoyed the visit and the warm reception. That seemed to get his spirits up again. We also got him the main present he was asking for - a large blow up water slide for the yard (the size of a moonwalk). Although he couldn’t really use it, he was able to roll around on the air mattress part and play a bit of catch with his left hand. He got a big kick out of this and enjoyed being on it so much that he wanted to have a camp-out in the yard and sleep on the air mattress part of it. After we thought about it, we said “why not” and made a real memorable experience out of it – dinner in the garden, roasted marshmallows over a fire pit, etc. It was great fun for all – especially Barbara, who could use all the features of the structure and slept on the upper level.

There was just one catch – we forgot to shut off the sprinkler system, so we all got woken up at 5 am in the cold and got soaked. Oh well, that just added to the fondness of our collective memory. Barbara was too excited to go back to school and tell all her friends about the camp out she had. Overall, Chase really enjoyed it too, even though he got nauseas again after dinner and vomited. He’s a real trooper and just tries to get over things quickly while looking on the bright side. He seemed really saddened at times, though, for example when he mentioned that he thought he wasn’t going to be on this medicine anymore after his birthday (of course, that’s what we had hoped too). We just keep reminding him that this will happen soon enough and that someday he’ll understand all of this and why he’s such a special kid – he’ll be able to help many others in this situation as well.

Thanks to all of Chase’s Prayer Warriors for helping to lift his spirits and make his 6th Birthday memorable!

Love,

John & Carol Sammut
Chase & Barbara Ann

Chase is Extremely High Maintenance at the Moment

Although we truly believe we’re at the turning point in Chase’s condition, he’s extremely needy at the moment – he doesn’t want to be left alone for a moment. This means that everything on the home front is “on edge”, with extremely high levels of stress at almost every moment. Since he can’t use his right hand and leg, Chase gets very frustrated often which quickly escalates to anger when he can’t do what he wants. This is of course understandable, but nonetheless unbearable when we’re hopeless to relieve him. All we can do in those situations is surrender to God and retreat in prayer (when we can remain calm enough to remember this) which is very hard with a yelling and crying child to deal with. Needless to say, we’re really learning the meaning of “handing it over to God” in this situation, because there’s simply nothing more we can do.

Fortunately, there are still some happy times. Chase went and picked out a hamster yesterday for his 6th Birthday and was really enjoying his company. He was giggling and chuckling for hours until Carol heard a loud scream and came running to find Chase vomiting violently. When he finally calmed down and was able to relay what happened, it turned out that something set him off laughing so hard that he got a head rush which led to the nausea. This little story clearly exemplifies the tenuous situation as well as the range of emotions that fluctuate at any moment. Add to this the fact that in those circumstances Chase only wants his mommy to be there, and it means that the pressure on Carol is almost unimaginable. Even more frustrating for me is being rejected many times when I try to console Chase, can’t understand what he wants, and ultimately nothing will do until Carol is back by his side….

I’m only relaying this background to convey the fact that more than ever we’re being challenged and having to turn to our faith as we’re clearly being put to the test. We know that we’re doing everything possible to support Chase’s recovery and that the ultimate outcome is up to God. However, complete surrender is never easy, especially when the “tests” occur on a daily basis, often hourly. We’re finding ourselves stumbling more often than we’d like and being brought back to our knees – which is the only place that is “safe” at the moment.

This afternoon, Chase is having some of his friends and classmates over to celebrate his B-day. We’re making sure he gets a good nap while hoping and praying that he can keep it together to enjoy himself. After organic pizza, cake and soy ice cream, we’ll be taking the gang to see the grand opening of Over the Hedge. Please lift Chase in your prayers today and throughout the weekend as we hope his recovery accelerates so that his pain can soon come to an end.

Thanks for all the prayers and support! With lots of love and gratitude,

John & Carol Sammut
Chase & Barbara Ann

Chase is on the Rebound

Since receiving the great news about the PET scan results, we’ve had a renewed positive outlook about Chase’s recovery. The Radiologist at the Burzynski Clinic reviewed the scan and concurred with the first read – no metabolic activity, which is a great sign. They want us to continue with their treatments for a while, since there could be microscopic cells that didn’t get picked up on the PET and we would want to knock those out to prevent a relapse. We’re still waiting on the second opinion from the Proton Beam Radiation center in Indiana – hopefully they will agree as well and provide some insight on strategies to help remove the necrosis tissue.

We’re also following up with our Nutritionist next week who has some specific ideas on ways to stimulate the body to absorb or process this tissue, including oxygen chamber therapy. We recently started giving Chase special foot baths that are intended to provide a detoxification benefit – what an eye-opener. You wouldn’t believe the kinds of gunk that this 20 minute footbath draws out of the body, which seems to confirm that detox is our real issue at the moment.

We’re extremely excited and anxious to see the results of these treatments to provide relief for the Chase’s symptoms. He’s still very nauseous (typical neurological symptoms with inflammation) - vomiting daily, and having headaches. We’re doing everything we can to reduce the swelling, but it may just have to take its course. We’re praying and visualizing the lesion breaking up into small pieces and being disbursed throughout his body to be flushed out. We can’t wait to see this happen!

I just received a link from a story that was on the Pittsburgh news a couple of days ago about Medjugorje http://www.thepittsburghchannel.com/actionnewsextras/9187210/detail.html . This is a very accurate description and shows what the place is like, including Apparition Hill that we climbed. I also received a link to a really special song that my friend Tom Nawrocki recorded about the pilgrimage http://www.septacom.com/chase.mp3. Just waned to pass these moving pieces along…

We truly believe that Chase’s miracle is unfolding before our eyes and we’re excited to share it with all of his Prayer Warriors - thanks for helping us keep the faith!

Love,

John & Carol Sammut
Chase & Barbara Ann

Praise the Lord for Chase's Miraculous PET Scan!

Chase had a pretty rough weekend (didn’t keep anything down since the lunch he had on Fri), so we were pretty concerned about his PET scan this morning. Luckily, he really cooperated like the good trooper that he’s been throughout this whole ordeal.

The results were just miraculous – no metabolic activity at all in a full body scan!! First the Radiologist sent the nurse to assure us that everything looked “good”, but of course we wanted to understand in more detail what exactly he meant. When I met with him, he said that the PET scan was “clean”. I asked what precisely does this mean and he said “weren’t you looking for a recurrent tumor after the radiation and chemo – well, there isn’t any”? When I explained that Chase has been on antineoplastons and other alternative therapies, but his MRI still showed a mass, the Radiologist responded, “I don’t know about that but the PET is negative”. He then clarified that it could mean either the tumor is “inactive”, or it is just an accumulation of necrosis (dead tissue) or both.

I immediately called the Burzynski Clinic in Houston and they too were elated, but cautious. Of course they want us to Fed Ex a copy of the CD scan to review it, but they feel it is what they were hoping – the tumor is dying off but needs time to be absorbed and processed by Chase’s body. After reviewing the scan, they plan to make recommendations for the treatment plan going forward. They feel it will just be a matter of time for the symptoms to subside and the tumor to shrink or ideally go away.

Chase’s Oncologist (Dr. Main) was also extremely pleased and just congratulated us. He doesn’t have any experience with this so he was also somewhat cautious and suggested that we get another opinion from the Midwest Proton Center in Bloomingdale Indiana – he feels that the Radiologist there is one of the best in the industry.

So for now, we’re just taking this as the glorious sign that it is – something seems to be working and we’re certain it has to do with all the prayers and support from Chase’s Warriors! This is the best news we’ve received since the start of this whole process and we’re keeping our eye on the prize. We believe more than ever that God has great plans for Chase and for all of us to bear witness to His healing power and infinite mercy! We’ll convey more as we learn it, but until then thanks for helping us keep the faith!

Love,

John & Carol Sammut
Chase & Barbara Ann

Chase will have a PET Scan on Monday

Chase has had a rough time for the past few days – very symptomatic with neurological issues due to the cranial pressure from the increased swelling. We’ve started putting a much greater emphasis on the detoxification aspect of his overall treatment plan and we’re hoping that will help soon. We also had another round of consultations this week with his Oncologist, Nutritionist, the Burzynski Clinic, Endocrinologist, etc. Our focus in the short term is to address his immediate symptoms so that he’s not so miserable with regular headaches and vomiting. We think that some of the adjustments we made are working because he didn’t have a headache this morning and he had a good lunch today (actually held it down for the first time in > 2 days).

We still need to determine whether the recent increase in the size of Chase’s tumor is related to actual cancer growth or necrosis (dead tissue that is accumulating because our treatments have been effective and his body just needs to “process” or absorb it). This is the most important information that we need to figure out how to proceed, and we should get this insight through the PET scan that is scheduled for Monday morning at 7 am EST. While we’re working on plans A, B, and C based upon what we learn from the PET scan, we’re hoping and praying that it comes back negative, indicating that there isn’t much metabolic activity in the tumor. The good thing about his antineoplaston treatments with the IV and pump is that it actually helps to slowly convert the tissue to normal over time and enable his body to absorb it with the volume of flushing that takes place on a daily basis.

So Monday will be another big day for Chase and we’re hoping that between now and then the adjustments we made will enable him to have a good weekend without too much discomfort. It’ll be nice to hear him laugh again and enjoy watching his favorite programs or reading his favorite books (Captain Underpants), which is about all he can do these days. We’re doing our best to remain positive, keep the faith and expect the best. All the support of Chase’s Prayer Warriers is certainly helping keep us all stay lifted along the way. We sincerely appreciate all the thoughts and prayers!

Love,

John & Carol Sammut
Chase & Barbara Ann

Miracles Don't Come Easy

We wish we had better news to report on Chase’s MRI from Friday, but unfortunately it showed an increase in size by about 25%. This is resulting in additional symptoms lately with more weakness on his right side – he is unable to use his right hand and his imbalance is preventing him from getting around much.

This was of course pretty devastating news and it took a while to pick ourselves back up again, but just like the resurrection, within 3 days we returned to full faith and confidence that everything is working out perfectly. We actually believe that there is significant breakdown occurring within the tumor but that it can only be purged from Chase’s body at the pace of its detoxification, which is becoming our gating factor. When you travel (particularly long international trips), the body tends to get dehydrated and this prevents the purging that is needed for detoxification. He also hasn’t been drinking enough fluids lately and he was constipated for a few days upon our return. All of this is leading us to conclude that our focus in the short-term needs to be as many aspects of detoxification as possible and we’re going to be adding a regular detox foot bath for the next few weeks.

On a positive note, Chase’s Naturopath did an updated frequency scan (advanced Rife technology) which seemed to indicate a significant reduction in the presence of cancer in his system. She believes the increased size is also either dead cells swelling or bacteria. Hopefully this is the case and with enough purging we can get the tumor to shrink so that his symptoms can subside. The swelling is causing nausea once again, headaches, fatigue and feeling bad in general.

Thus, we have chosen to keep Chase home from school – there’s only a few weeks of kindergarten left and he’s not in any condition to participate (he’s actually somewhat miserable when pushed to participate in things). The positive side of this is that he’ll get a lot of quality time with Carol, which is what he probably really needs for the TLC to get healed. He’ll also be able to take more naps, which again should help his body repair itself, and being home around the clock will enable us to monitor more closely his meds and make adjustment, if necessary. Of course, this means a lot more work on the home front in the short term, but perhaps this is a blessing to keep us all focused and grounded in devout prayer.

In short, we think this is just another test of faith. Sometimes it’s darkest before the light – we just have to remain positive and pray that His will be done, believing that whatever that may be, it’s Divine Order and in our best interest. One last positive note – I received an e-mail update over the weekend about another patient (6 yrs old) with the exact same condition as Chase, diagnosed 2 wks after him and her MRI last was essentially clear (a vague shadow of the old tumor). They were using the same homeopathic remedy we are and a lot of prayer – God is good!

Thanks for all the prayers and support! With lots of love and gratitude,

John & Carol Sammut
Chase & Barbara Ann