Chase Hit Another Minor Speedbump

Well, first for the good news – Chase had nearly 3 weeks straight of all around stability – the longest stretch since the start of this ordeal. His energy has been up and he had a blast swimming and playing basketball over the weekend. He definitely doesn’t have the strength that he did last year (couldn’t get the ball to the basket this time), but it didn’t seem to bother him that much. He’s just enjoying getting out there and mixing it up. Chase swam like a champ with the advanced group in the camp and he seems to have gotten over his apprehension of the deep end again.

Unfortunately, his luck ran out by Tuesday of this week. We had difficulty with the IV tubes leaking over the weekend and that seemed to set the stage. Carol ended up spending 4 hours with Chase in the emergency room from 1-5 am trying to get someone to correctly change his port access and that just ran them both down on energy. Then Chase ended up with nausea again with a fever for a couple of days and had to stop all treatments and miss school. This created an even greater burden for Carol to wait on him hand and foot through this period. When we got the results of his bloodwork, we could see why he didn’t want to tolerate treatment or eat much – his potassium was the lowest it’s ever been and his sodium was off the chart (probably due to dehydration related to the fever). Chase seems to be coming around again today and hopefully he’ll get back to normal by tomorrow so he can resume the antineoplaston treatments. His next MRI has been confirmed for February 16th – we’re really looking forward to it because we expect to be able to report more progress this time around.

Thanks for all the prayers and support! We truly appreciate it!

Love,

John & Carol Sammut
Chase & Barbara Ann

Homeopathic Remedies

We've received several inquiries again about the Homeopathic remedies that Chase is taking which were recommended by Dr. Banerji. We have found that he is very responsive to specific questions via e-mail and his contact info is:

Dr. Prasanta Banerji
PBH Research Foundation
10/3/1 Elgin Road
Calcutta - 700 020
India
Tel: +91 33 22472845
Fax: +91 33 22477275
Email: pbhrf@vsnl.com

Dr. Banerji has been reporting his findings on the treatments to the National Cancer Institute for several different types of conditions over the past 10 years, but they've been very slow at embracing them (despite the overwhelmingly positive results).

In terms of ordering the homeopathic supplies, we've used Kemp Homeopathic in San Diego at (619) 234-2166 for Ruta 6 and Cal Phos. I hope this helps. If there are any other questions, pls post them to the blog or my personal e-mail at john.sammut@epictech.com. (for the comment posted by Schlobro, I don't have a return e-mail address).

Chase is Getting Back on Track

We’re pleased to report that Chase’s bloodwork yesterday had the best results in months – he’s at normal levels in essentially all areas (hemoglobin > 12, potassium 4, albumin > 4, etc). The transfusions have been a tremendous success and it’s already reflecting in his energy level, positive attitude, etc. His stomach is also coming around, thanks to the recommendation of Auntie Cathie to use Prilosec. Although he’s still complaining of a sore stomach from time to time and his appetite isn’t at full strength yet, at least he hasn’t vomited in about two weeks. This is a huge relief!

Chase went through with the basketball camp over the weekend and really enjoyed it. He’s looking forward to the season starting this Friday evening for the next 6 weeks. Barbara came out with him this time and to our surprise she liked it so much she wants to join the team as well. Although Chase didn’t participate in the swimming last Sunday, he’s promising to give it a go this coming weekend. Barbara is inspiring him to stick with it, since she remembers that he’s been a better swimmer than her in some areas and she’s excelling in the swim camp – maybe she’s looking forward to Chase challenging her again.

We’re scheduling the next MRI for mid-February and looking forward to confirming the improvements that we’re beginning to see in Chase’s condition.

Thanks for all the support!

Love,

John & Carol Sammut
Chase & Barbara Ann

Chase is off to a fresh Start

Chase’s hemoglobin continued to decline last week to 7.3 and we decided it was time to have a blood transfusion. We took the opportunity while Chase underwent the several hour procedure at the hospital to meet with a Pediatric GI specialist as well as an Endocrinologist. After the series of meetings and tests, we feel that Chase is getting off to a fresh / “clean” start. His energy level has increased significantly. We determined some of the sources of his stomach issues (fortunately, it wasn’t an ulcer, just a major irritation in his lower tract due to the bouts of diarrhea) so we’re backing off further on some of the supplements and the best news of all – he’s completely off the steroid (decadron). We’ll have a couple more months using a milder version of the steroid (cortisone), until we can get his endocrine system to turn back on in the absence of these drugs, but we’re finally on track to his complete recovery from the side effects. Chase will probably have another transfusion at the end of the week, to ensure that his numbers are all boosted high enough in a “safe” range and we’ll continue to monitor from there to hopefully keep him healthy and strong.

All in all, it was a positive finish to a week of more ups and downs. Chase is in excellent spirits again and we’re hoping to capitalize on his higher energy level to get him back into sports – his basketball team starts next week, he’s in a weekly swimming camp on Sundays, and he’s considering getting back into karate again. These are all great outlets to keep his spirits and energy level high while we continue to fight his condition. Knowing that this is becoming more of a marathon than a sprint, we’re trying to keep the situation as “normal” as possible and prevent his grumpiness from inhibiting the activities we know are good for him. Barbara continues to be a great supporter as well and is signing up for all of the same activities with Chase to keep him encouraged. Unfortunately, it didn’t start off so good – during the swimming camp this morning, Chase didn’t cooperate (despite Barbara’s efforts), but she went through with it and had fun anyhow. Hopefully, it’ll be better next week… with all the prayers, he’s being lifted up throughout the process.

Thanks for all the support!

Love,

John & Carol Sammut
Chase & Barbara Ann

Happy New Year!

Chase had a wonderful Christmas, along with Barbara Ann. They woke up to a lot of presents delivered by Santa, and at their age they are complete believers in all the traditions. We all really enjoyed the holiday break and spent a lot of quality time together. Overall, Chase was doing fairly well on the treatments until late last week, when he started having more severe stomach pain.

We took a break from the Antineoplatin treatments for a couple of days over the weekend and things seemed to get a bit better – Chase regained his appetite and started acting like a normal 5 year old again. That is until we started on the treatments again – this seemed to flair up his stomach pain, which really got exacerbated again tonight, when we had to stop the treatments again. He’s complaining of really severe pain in his stomach and even had blood in his stool twice today.

After talking through the issue with his doctor from the Burzynski Clinic as well as his Nutritionist, we believe he may have developed some type of ulcer in his stomach or perhaps somewhere in his intestinal tract. Some of the potential culprits include the long-term use of the steroids (which he’s nearly completely off) or the potassium (“nu salt”) added to his food and drinks. We’ll begin narrowing this down tomorrow with some further tests. We’re hoping it’s as simple as determining where the issue is and treating it so that his system can quickly heal and he can get back to stability with his treatments again.

The best part of this whole process was being able to see the “old” Chase (with no treatments) – it was amazing to us what a different kid he is when he’s not bogged down with all the side issues that come along with all of the various things he’s going through. He’s longing for the day when this becomes the norm again and not the exception. We’re confident that we’ll find our way back to that place sometime in the New Year and we have faith in the miracle that’s unfolding before our eyes.

We hope everyone had a fun and safe break and that the New Year brings more health and prosperity….Thanks for all the support that we’ve received as well as your ongoing prayers for Chase. He’s going through a real challenge again and hopefully we can get to the root cause of this latest setback quickly.

Lots of love and gratitude,

John & Carol Sammut
Chase and Barbara Ann