5-year old Kate H. was having very bad headaches in December 2005. An MRI on the 22nd revealed that old bastard, the DIPG, a tumor on the brain stem. It’s very hard to treat with chemotherapy, surgery, and radiation. Not only is it in a hell of a sensitive area, but children’s developing brains are vulnerable to these treatments.
The family was almost immediately on their way from Detroit to Memphis. By the end of the month, they were settled in on the campus at St. Jude. On the 30th, they were presented with the choice of a phase II trial or what seems to be a phase III trial, and she was fitted with a mask for radiation.
St. Jude’s is amazing, people, and I hope you donate to them. To help Kate get through her treatments, including MRI’s and IV bags, they let her be the doctor to dolls, doing those things to the dolls before she goes on them. By the end of the first week of 2006, we hear that the family has moved into the Ronald McDonald House and this:
We are looking on putting her on the protocol (Iressa) but we are still exploring options. Tomorrow we are going to meet again and try and do a conference call with [Kate’s Dad] so we can get the ball rolling.
They decide to go ahead with this treatment. So they have a port put in and surgery by the end of the week. She starts radiation on the 9th of January and is sedated for these treatments.
The family settles into a routine–the father comments how strange what passes for normal is when you are going through treatment. This carries them through the month. A long procession of volunteers from all sorts of churches, civic groups and colleges come through the RMH to entertain the kids and give a hand to the parents. As this goes on, they keep a regular journal and even raise money for Ronald McDonald House for a national radio-thon. They raise an insane amount of money. Feb 21st is her last day of radiation, and the whole staff who has been treating her make a shirt for her.
On March 2nd, the family is back in Memphis, and the next day they get good news about their MRI. The tumor has shrunk considerably. She will be returning to St. Jude every month for follow ups. In mid-April the family goes for an awesome Disney vacation (limos and everything!). Things seem really stable all summer, but Kate is complaining of some hip pain. Nothing seems wrong with the joint, so when they go in in August, they MRI her spine and find tumor.
On Aug 27th, the family is looking into alt med, but still going ahead with radiation and it looks like they are anticipating a chemotherapy regimen, though they don’t know what will be open when she is ready to join a trial. They finish this round of radiation by Sept 16th.
On Sept 24th we hear this:
This weekend sure did go by fast. On Friday we signed Kate up for the Vibe Machine. It is suppose to put energy into her cells to help fight off the cancer cells. Cancer cells likes to suffocate cells that are dormant. So we are hoping this will help fight the cancer cells. You can check them out on www.vibemachine.com
“Energy.” Right. If you go to that website now, you get a warning. Vibe Machine, no surprise, was a scam:
WARNINGThe VIBE Machine is not a Medical Device as defined by CFR 21 U.S.C. 321(h). It is NOT intended for use in the diagnosis of disease or other conditions, or in the cure, mitigation, treatment, or prevention of disease, or affect the structure or any function of the body of man or other animals.
Any such use may violate federal law.
By which they mean, a total scam. I have nothing but contempt for the people who sold this to a desperate family.
Even though Kate is going to school and getting along really well, the tumor, we learn on October 11th, is progressing up her spine. It looks like there might be flecks of tumor appearing near the brain stem as well. On the 18th, the family is in Houston:
Well, the [H] family is off again. I mentioned in my other entry that we were going to investigate other treatment options because the chemo didn’t seem to be working for her. We are in Houston Texas tonight and we are going for a consultation tomorrow.
On the 21st, it is clear that they are at the Burznyski Clinic. How do I know? Because the doctor is optimistic and because the next day the are going through ANP boot camp, where they will be learning how to change lines, IV bags, and fend for themselves.
Thursday Kate went for a physical and she did fine and she would qualify for the treatment. Friday, we met with the Dr. and discussed his treatment and his opinion on Kate. He mentioned that her case is a little tougher due to the tumor spreading to her spine. But he was at least optimistic on the outcome which is good. So we will have blood drawn on Monday and Kate should start treatment on Tuesday.
The 24th they start treatment:
Tomorrow we will start the actual medicine into Kate. They will start with 10cc and move up 10 cc everyday until Kate reaches 250cc’s. We are hoping she does not have to many new symptoms from the treatment due to treatment.
We will probably be here for about 3-4 weeks, depending on how Kate handles the treatment.
The update following the start of treatment:
Well, today Kate started her treatment. She is doing test doses to make sure her body can handle it. Each day she will go up in doses if everything goes well. So far so good. She seemed to handle the first dose like a champ. Mom and Dad are a little overwhelmed with all the paper work we need to keep track of and the learning but we will figure out a system that will work. We have to keep track of her sodium, the fluid intake and outtake (and yes I mean Outtake, not pleasant.). Tomorrow she will go back and they will up her dose and see how she handles that amount.
Yep. It sure looks like they are preparing for the known toxicities of antineoplastons. On the 26th of October, Kate’s on steroids, which makes her irritable, and she’s having headaches. And they are apparently fed the line:
Today Kate went up in dose again. She had a headache earlier in the day. That could be from the swelling or the breaking down of the tumor. Let’s pray that it is breaking down the tumor.
The same story that we hear over and over. With Evan W. With Amelia S (poor, sweet child–we won’t be posting her story here for some time; they’ve done enough to that family). With Justin B. With Georgia M. With Cody G. With Leslie S. With Chase S. No progression of symptoms can’t be interpreted as positive at that place. And consider that for most of these patients, they have had nothing but bad news for a long time. Think of how thirsty they must be for anything that reassures them.
We are seeing a few more side effects. We talked to the doctor about this and she had mentioned that one of the patients there had the same diagnosis and when this happened his tumor shrunk over 40% on the first MRI. I pray that these side effects are because the medicine is breaking down the tumor.
On November 2, 2006 (such a long year–my god, all the travel and treatments!):
Kate continues to go up in doses everyday. She is still experiencing about one headache a day. We are going to monitor that to make sure she isn’t in any pain. If she continues with the headaches she may have to go up in the steroids. This just means she might have a little inflammation we need to get under control.
The family is more explicit about the known side effects on the 4th:
The nights are getting longer. Kate is up about 5-6 times during the night because of all the water she drinks and the medicine. Which means mom or dad are up. She has been taking alot of naps throughout the day.
On the 5th:
Today we went to the clinic to get Kate’s daily medicine. Kate is doing OK. She is still having trouble with chewing and she is starting to complain a lot about her legs hurting. We don’t know why! Well, we kind of know why. I guess its either the tumor growing or the medicine working. Hopefully its my second choice.
I must admit, these past 3 weeks have really been hard on us. We have seen Kate go from no symptoms to multiple symptoms. We are trying to stay positive, but sometimes its really hard.
The family seems to be exploring other options (since they are in town with MD Anderson a half hour away). They explore experimental virus-based treatments:
We met with Dr’s from MD yesterday and discussed a different treatment called MTH-68. Which is performed in Hungary. After many discussions, we feel this is not a valid treatment for Kate. They did offer other treatments in place of MTH. We will consider these after we get our MRI reports back tomorrow. Kate has been doing pretty good with the treatment, except for the new symptoms. I know we are dwelling on this but Kate has never had one symptom and to see her with 4-5 it’s really heart wrenching.
On the 10th, it seems clear to MD Anderson that the ANP has done nothing to stop the spread of the tumors:
Tonight we are writing to you with heavy hearts. We went to MD Anderson for our MRI results from yesterday to learn that the tumor has grown even more from last months MRI. The tumor on the brainstem has grown on both sides of the pons as well as new tumors in other locations. This is the reason that Kate is having her symptoms and it appears that they will continue due to the growth locations. There are many vital nerves in the brainstem and that is where most of the tumor is.
So now what? We are going to stay in Houston unitl we can meet with Burzynski clinic so he can read and look at the MRI. This will be on Monday. We want to hear his feedback and see if we should continue on his treatment. MD Anderson has offered us a treatment as well.
This is the first time they mention Burzynski in the journal. On the 15th, it seems they are leaving Houston, and it looks like the ANP has been nothing but side effects:
Kate has been really tired and sleepy over the past few days so we decided to have the clinic check her out yesterday to make sure her blood work was OK. The results showed that her potassium was low so they gave her some fluids with potassium mixed in the bag. She was also having horrible headaches where she would scream so loud. This really broke our hearts. We would try everything to dissolve the pain but it just did not help. So we all decided to increase her decadron to help with the swelling. Since we have did this she has not yet complained of a headache.
They look like they are trying to rent an RV or maybe get a private flight back to Michigan. They are home on the 19th, but they still seem to be on ANP when they take her into the hospital back home for emergency surgery and a shunt to relieve pressure on her brain on the 24th. The next MRI is not encouraging. On November 30th:
Kate also had an MRI on Wednesday. We are very disappointed with the results. The tumor has grown significantly from the last MRI a month ago. We are truly heartbroken. We will be sending the MRI to Houston so they can review, but we feel this will be the end of her current treatment. She has had 2 months of progression so its pretty obvious that her body is not reacting to the treatment.
Sadly, though perhaps not unexpectedly, the ANP failed. They are taking her off. She is still declining, though. On the anniversary of the diagnosis, her parents reflect:
As I look back on this year and reflect I have a lot of mixed emotions. It has been a really rough year to say the least. We have been traveling from here to there trying to find treatments that would be successful for Kate. During this journey we have also met so many wonderful people. We are thankful that. We feel blessed by all the wonderful friends and family we have.
Kate has also taught us so many lessons. She taught us to never give up even when the chips are down. She also taught us that life is precious. She is such an inspiration to us and I couldn’t be prouder. It is an honor to be her mom and dad.
Kate passed away on 27 January 2007.
These stories don’t really end, though, and Kate’s parents continue to advocate for research into cancer and helping those in need at St. Jude. On Aug 4, 2007, the family hosted the first AdvoKate run/walk. They held the sixth one in August 2012. An amazing and fitting legacy, I think.
For reliable information about clinical trials, visit clinicaltrials.gov. Please consider donating to St. Jude Children’s Research Hospital, the children’s hospital that once helped a young friend of mine who is no longer with us. As always, visit patients’ websites for the full story from their perspective.