First Round of Immunotherapy in the books…….
As we near the end of our first round of Immunotherapy treatments, we wanted to let everyone know that Hollis is doing pretty well. Besides some tired feet since we walk to and from the clinic every day for about 10 minutes, he’s much better than we expected him to be feeling actually! We weren’t sure if he would feel fatigued or have other side effects from the treatment, but so far neither has occurred. We knew there was a chance his symptoms would reoccur as the treatment is intentionally agitating the tumor, but alas they have not so far. We thank you all for your specific prayers regarding this! Besides the occasional needle poke, Hollis doesn’t seem to be in pain during the treatment. He is annoyed about the heat from the Hyperthermia on his head, but it rarely causes too much discomfort. For those not aware of the type of treatment he is receiving, we’ve included a detailed account below…
We have greatly enjoyed our time in Cologne so far. It is a beautiful city with very friendly people, most of them for the most part even speak English! We are staying in a convenient and very comfortable apartment that belongs to Marc Hurfeld, a dear friend of Shane’s whom he went to high school with back in Arizona in the early 90’s. He and his wife, Jin, were gracious enough to host us and enable us the opportunity to provide Hollis the treatment he needed within close proximity. We are a 10 minute walk from the clinic and try to take a slightly different route most mornings so we can see more of the city. When we look out the front window, we have a great view of the two twin spires of the Koln Dom, the tallest Cathedral in Europe!
For the most part, the boys are greatly enjoying their time here. The treatments take about an hour each day and we’ve tried to make at least 1 adventure happen daily too. It would be a shame to visit a city like this and not see as much as possible! Even just walking to the river Rhine is an adventure, plus the exercise helps Hollis keep up his immunity. However, I don’t know that we’ve ever seen so many ice cream parlors/bakeries/candy shops/etc in one city! So, all of the window shopping by the boys makes the walking even longer!
One other important mention is meeting and befriending the Martin family, a precious and warm foursome from Roscommon, Ireland. Ivan, Tracy, Doireann (Dare-en) and Siofra (She-fra) made their way to the IOZK Clinic almost around the same time we did. Their daughter Doireann is also battling DIPG and is undergoing the same treatment as Hollis, essentially and literally walking hand in hand. It’s one thing to speak with another family from another part of the country who has a child that is undergoing treatment or experiencing DIPG but to physically sit side by side with another family half way across the world, it’s almost unexplainable. This is a bittersweet relationship because we NEVER should have met the Martin’s or the Cozzi’s or any other DIPG family but we did. So you know what? We’re going to hang on tight to one another as we all strap on the armor to fight this fight. And the fact that the Martin’s are from Ireland makes it that much more sweet, at least for Shane, because Ivan has clearly become Shane’s new BFF. He stayed out one night with Ivan until 1:30 am watching a few Euro Cup matches including Ireland vs. Sweden. Imagine Shane, hanging with a true Irishman, in a small, quiet Irish pub in Cologne, Germany watching the Republic of Ireland play soccer in the Euro Cup…….hall pass granted, this time! Needless to say, we have shared a few precious experiences with the Martin family like going out to meals or having fun at the zoo. They have helped create some normalcy for us and this situation and I can only assume that we have returned the favor. We have come to love and adore their two little girls like they were our own. Why not? We’re fighting the same fight and it’s better that we do it together.
I need to switch gears for a second because many people have been asking why we chose Immunotherapy, an individual cancer therapy with specific activation of Hollis’ immune system. I know Shane mentioned this in a Facebook post so forgive me for the reiteration.
His immune system needs very specific information about the cancer cells that are on his brain stem and this is where the knowledge here in Cologne, Germany about the biological principles of immunology comes into play.
Hollis’ own dendritic cells will play a key role in his immune systems reaction to DIPG. Hollis had ALOT of blood drawn from him, I mean ALOT on day 1. From this blood, a subgroup of white blood cells are isolated, which then can be differentiated into dendritic cells of the next 5 to 7 days. The preparation of dendritic cells requires a lot of time and personnel, hence the high costs. Hollis’ dendritic cells get loaded with the necessary information about the cancer cells outside his body in a lab. In an elegant way, his dendritic cells are brought into contact with antigenic, inactivated and specially processed tumor cells, thus loading them with the necessary information.
The transfer of the information from the dendritic cells to the lymphocytes occurs inside Hollis’ body. For this purpose, the dendritic cells are generated and loaded with tumor information in the IOZK lab and then injected back into Hollis. They migrate to his immune system and transfer the information to the lymphocytes. These are activated through contact and then start fighting any abnormal cells wherever they find them.
A virus as an ally in immunotherapy: there is a clever method of overcoming the body’s tolerance against cancer cells. Some viruses infect only tumor cells without harming healthy cells. One of these viruses is the Newcastle Disease Virus, whic was given to Hollis today via IV drip. NDV is harmless to Hollis and does not lead to any detrimental effects on his health whatsoever. The virus alters Hollis’ infected tumor cells and as a result, they send so called danger signals. This helps Hollis’ immune system to recognize these calls as dangerous and attack them. This method overrides immunologic tolerance towards cancer cells and subsequently destroys them.
Next comes the healing power of Hyperthermia. The picture you’ve seen posted of Hollis is him undergoing 45 minutes of Loco-regional deep tissue hyperthermia. This external applicator that you see is positioned on Hollis’s head and radio waves of a distinct frequency are focused on his brain stem, where the tumor is located. This technique takes advantage of the fact that the properties of cancer and healthy cells vary in some aspects. Therefore, they react differently to radio waves: whereas healthy cells are not affected by these frequencies, the membranes of tumor cells are forced into an oscillation that hears them and destroys their cell walls – the cancer cells perish. To prevent cell death, tumor cells generate heat shock proteins (HSP), which enable the immune system to identify tumor cells that are actually invisible to Hollis’ immune system, this facilitating the immune response against the cancer. The efficacy of conventional radio is enhance by hyperthermia owing to increased blood flow and cell division in the tumor tissue induced by the rise in temperature.
The bottom line is Dr. Van Gool and this clinic offer Hollis the highest likelihood of having the most best days. They strongly DESIRE to help Hollis because he needs help now. Having said that, our first treatment experience went as well as we could have hoped for. We’ll be spending a few days seeing the sights with the boys and then my mom will be flying over on June 22nd to be with us for a few days before Shane and Rhett head back to Phoenix. I am looking forward to spending some quality time with my mom and Hollis for a few quiet weeks before his 2nd treatment starts July 4th. We then will return back to Phoenix in the middle of July but will have to return back to Cologne, Germany for a 3rd treatment July 31st. Anyway, thank you again for all of your continued support and prayers…..rest assured that they are heard and felt.