Thursday, November 1, 2012

Gavin's Medical Update

If you read this post, it's because you want the more detailed version of what's going on with our it is:

As most of you know, the disease inside Gavin's stomach has begun to slowly spiral out of control again....but since his condition is so complex,  I am going to back-step so that I can give everyone a clear picture of what we are facing now.

In 2006, a GI at UCLA discovered ulcers covering the entire inside of Gavin's GI tract.

He was only 15 months old.
These ulcers went from the top of his esophagus to as far down as they could see inside his intestines, even though he had been on acid blocking medications since he was 4 weeks old {for what we thought was only acid reflux}.
Blood testing revealed that he had an excess of a digestive hormone called gastrin in his bloodstream.  His level was 16 times the normal amount, and as a result, his stomach was producing gastric acid 24 hours a day, resulting in over-excessive amounts being present inside his GI tract all the time.

Further testing revealed that a gastrin-producing tumor was the source of the problem, but after a 3-day whole-body scan, no tumor was detected. 

Years later, stomach biopsies revealed that abnormal gastrin cells had infiltrated the entire lower half of his stomach in a cancer-like fashion.  Because we found these severely abnormal cells, and his gastrin level stayed steadily elevated for many years, we concluded that these excessive cells that cover his stomach was the source of the problem instead of a tumor.

However, we were disappointed to know that the only treatment for that is to surgically remove this diseased lower half of his stomach.

So we chose to get very aggressive with medications, and overall, we have generally been successful in managing the symptoms caused by these abnormal cells.  However, we knew that eventually, the medications would stop working, and unless God intervened, surgery would eventually be necessary.

This brings me to now.  

His "red flag" symptoms presented about a month or two ago....they have been progressively getting worse, but the aggressive doses in his rescue medications have prevented an emergency thus far. 

We are grateful for that. 

Our usual next step has always been to do blood tests.  So we did it, and the results alarmed us.  
It revealed that this gastrin level--that has steadily been at 16 times the normal amount for the past 5 years--
has now jumped up to 25 times the normal amount in only a year's time.  

As a result, his doctors fear there might actually be a tumor. 

Gastrinoma tumors are known to start off as microscopic and they are notoriously difficult to detect.  They are characterized as tumors that grow slowly for many, many years before being discovered, often times after it has metastasized to the liver.  Over half are malignant. and it is described as an adult condition.  The youngest documented case is a 7 year old boy in Japan; in pediatrics, only one other case was documented in a 16 year old boy. 

It's rare....but {everything} about our son's medical conditions are rare. 

And even if he doesn't have a tumor, all of this, with the presence of Mastocytosis, is still rare anyway. ; /

All of his doctors agree that we need to do a planned admission before Gavin's condition spirals into an emergency.  

He will be admitted on Monday November 12th.  

Because of his Mastocytosis, he has a protocol that prevents anaphylaxis before undergoing any kind of procedure or test. 

So first, he will have a PICC line placed under sedation with his Mastocytosis Specialist.  The PICC line will be used to administer IV fluids 24 hours a day the entire time he is in the hospital, and also to administer IV Solumedrol {steroids} and IV Benadryl daily to control the Mastocytosis reactions he will inevitably have anyway.

Once he has the PICC, and has had IV steroids in his body for 24 hours, his GI will do an endoscopy and he will take tissue to biopsy from his esophagus, stomach, and duodenum.  The pathologist will not only do the routine stains, but he will also be checking for any pre-malignant or malignant changes to the abnormal gastrin cells in the antrum of his stomach.

Next, the GI will place a PH probe wire down his nose, and thread it into his esophagus while threading a second one down into his stomach.  The wires will be connected to a small computerized device and will stay in place while it measures all acid production for a 24-48 hour period. 

Once that is complete, he will receive radioactive dye through his PICC line, and undergo another 3-day whole-body {octreotide} scan to search for a gastrinoma tumor. 

Once we have the results of the endoscopy, ph study, and the tumor scan, the next steps will be determined. 
If the studies reveal that the 120 mg of Prevacid is no longer effective on him, he will be put on another acid blocker such as Protonix or Nexium to see if a different medication in the same class of meds will work effectively, at least temporarily.

However, he'll need to remain in the hospital to find the right dose, to see if it works, and to manage any potential Mastocytosis reactions to the new medications.
At some point, whether it be during this admission, or later on down the road after finding that a new medication worked successfully for awhile before eventually failing like the others, we'll need to do surgery to remove half of his stomach.

On the other hand, if they detect a tumor in the scan, surgery will be needed to remove the tumor (and Oh Lord, if there is one, PLEASE let it be BENIGN!!!)...and he could potentially be cured and spared surgery to remove half of his stomach.

So all this starts on November 12th. 
{assuming insurance approves it} 

Please be praying:
1.  For Gavin--for whatever God puts on your heart, that a new medication works successfully so that surgery isn't needed, that he won't have a tumor;

2.  For Chelsea--that she won't have the emotional problems she's had with Gavin's past admissions, that she will be comforted by her friends and other family members, have fun with them while I am in the hospital with Gavin, and that she will be protected from panic, worry, and depression when she thinks about her brother and being away from me;

3.  For me and Tim--for our marriage to be strong, our faith to not waiver, and for peace in place of worry and comfort in place of sadness...that we'd be able to see the big picture and God's hand at work in this situation and glorify Him in all we say and do;

4.  For me--that my medical conditions will remain stable under the stress and that I will still be able to receive my 4 liter weekly infusions while we are at a children's hospital; 

5.  For Tim--to be able to take off of work the entire time that Gavin and I are in the hospital without his job being threatened;

6.  For Gavin's doctors--wisdom to make the right decisions, and that the three of them will remain in absolute agreement on next steps--that those steps would be alligned with God's will, and that we would be at peace with what those steps are; 

7. For my parents who are still living with us, as my dad is still recovering from a stroke--that they would have peace replace their worry, that they would witness God's hand at work in our lives and that they would draw near to Him.   

We covet and appreciate your prayers.
Thank you so much for loving and supporting us on this long road; we are forever grateful!


  1. I do not usually leave a comment, but I cannot help but add my prayers to you and your family. I think of my own healthy, active son and cannot imagine the feelings you and Tim are going through. We are always stronger than we give ourselves credit for. May God hold you in the palm of his hand during this time.

  2. I normally just read, you were one of the first Masto sources I found after I was diagnosed.
    I will be lifting your family up in prayer. Praying for radical healing for Gavin. Peace beyond understanding for all of you. Wisdom and guidance for the doctors.

  3. I will also be praying for you and your family and the doctors. It seems like they are taking all the precautions possible. Would I be able to send each kid a little care package? Take care!

    1. Thank you so much for praying for us! What kind of care package?

  4. I am so sorry to hear about your son's condition. I rarely have my tears floating by my eyes when reading a blog post. I am praying for the best for Gavin, you and your entire family. Sending you a lot of positive vibes XX

  5. Hello. I read your blog often. I like in Hong Kong. I just wanted to let you know when I read this post I immediately prayed and was in tears. You can count on prayers for Gavin and your whole family from me. GOD BLESS- Lizzie

  6. Please forgive my ignorance, but what would happen if your son's diseased lower stomach were removed? Would that heal him or cause a whole host of other issues to deal with? My birthday happens to be November 12 and my birthday wish this year is for your son to make it through this journey and be fully healed. You and your family are so brave and I wish the best for all of you.

    ~Megan (in Morocco)

    1. Thank you Megan! Yes, removing half of his stomach would cost a whole lot of other life-threatening problems. He wouldn't be able to absorb vitamins and minerals necessary to sustain life, such as iron and b12. So he would need routine infusions which normally put those with Mastocytosis into anaphylactic shock. He would likely be unable to gain weight and grow...the surgery is somewhat like what they do for morbidly obese people...except it would be done on a 45 pound 7 year old, with the same effects. Plus the surgery itself is dangerous, and extremely invasive. They'd have to create a new part of a stomach with some of his intestine....the whole thing would be overwhelmingly scary and his recovery would be life-threatening because of his Mastocytosis. It would all be very complicated. Thanks for asking ;)

  7. I'm another one who reads and rarely comments. Praying for you!Please keep us updated as you are able.

  8. Hello i wanted to say im so sorry about what happened and i prayed to all of u many many times i would love it if u posted more photos to kinda show us a idea but hey ur busy i understand i cant imagine what it must be like to go through this!


I love to read your comments so thank you for leaving one. :) If you have a question for me, please leave your contact information so I can get back to you with a response.