Our follow up appointment on Monday with Dr Ruge went great. He was very pleased with how great Cade looked, how he was moving around, and how nicely his incisions were healing. He did say he needed to still take it pretty easy for another couple of weeks as he continues to heal. They placed a patch at or over the dura during surgery and it is important that this patch continues to heal. He doens’t want Cade doing anything aggressive that would increase pressure to this area and risk the patch leaking or tearing. That would be bad. At the same time, I chuckled. Try telling that to this 2 year old as he’s chasing his brother through the house. Or hanging half off the couch as I caught him the day before. He also cannot submerge his head in water yet, which means still no full blown swimming. Which is probably for the best, otherwise he’d be expecting to jump off the side and go down the slide like he usually does with Rylan. The teams are all in communication with one another, which is fantastic. And it makes things very simple and smooth for us. While we were at Lutheran, we also had our palliative team pop in and check on him. They are wonderful. They wanted to change his medications around a bit. They started him on Marinol to be taken twice a day. This is a synthetic version of THC and we are hoping that it will stimulate his appetite while also giving him relief of the nausea and vomiting. Our goal was to start this in addition to all of his current medications, and then after a couple of days remain only on the Marinol and begin using everything else only if it is needed for breakthrough vomiting. Today is our first day trialing the Marinol only. Fingers crossed! 🤞
This week was the 4th of July and probably the least festive holiday we’ve had yet. We did not go to a single parade, see a single firework, do sparklers, cookout. Nothing. Cade enjoys being outside. Loves being outside actually. But the heat is a lot for him. We had breakfast outside the morning of the 4th and within 20 minutes he was wanting to go inside. It was only 8am. That was all I needed to decide it was going to be far to hot to put all the efforts of lugging the kids and required necessities and go sit outside in the heat for a parade. Instead, we put the sprinklers and slip and slide out for the day and the boys got to play with their buddy Alex (thanks again Laura for bringing lunch!) and their uncle and cousins all day. There was lots of fun with water guns and buckets. All in all it was a perfect holiday given the situation and Cade’s restrictions. I wore Rylan out enough that he didn’t even remember about going to see fireworks. While this would normally be sad to me (I love fireworks!) it was actually perfect because I was exhausted!! They were both in bed by 7pm and I was passed out by 8:30. A good night of sleep needed by all. Especially when we had to be out the door so early the next morning for our appointment.
Yesterday, July 5, we left the house around 7:30 in the morning to make our trip to Lurie’s Children’s for our meeting with the oncology doctors there. We met with Dr Lulla who was absolutely wonderful! Who then informed us that he is unfortunately leaving the practice next week and moving to take a director position out on the east coast in Rhode Island. Wonderful for him. Totally disappointing for us. He spent a great deal of time with us explaining everything, drawing graphs out and details out as he spoke with us and then giving us all of this for our own reference. He went on to say he too would not recommend radiation for Cade unless we were okay with him not being able to do things like live independently or go to college. Which as we had decided last week, we are not. Dr Lulla discussed in detail the chemo treatment option that was given to us by Dr Agrawal. What most people sadly familiar with this world refer to as the 3 and 3 treatment. 3 rounds of standard chemotherapy using multiple agents and the WBC harvesting followed by 3 rounds of high dose chemotherapy using 2 medications along with the stem cell transplant of his WBC with each of these rounds to help boost his system back up. This was the treatment we were left with and anticipating. Dr Lulla said they prefer to be completely transparent with parents from the start, and that while they have every intention of curing Cade of this. That is obviously their priority. The goal. He did want us to know that the prognosis with chemotherapy treatment and his tumor, age group, etc. is 50-60%. Hearing this I felt my breath catch in my throat and tightness in my chest. I can’t even think of this. It’s not happening. It can’t. I HAVE to believe Cade IS going to survive this and WILL kick cancer’s you know what! Deep breath.
Dr Lulla went on to inform us that there was a clinical study currently being done called Headstart 4. We had heard this referenced throughout posts on the FB site we joined of parents with children specifically with Medulloblastoma. The clinical study is being done to determine if 3 rounds of heavy dose chemo is truly necessary, or if just 1 round (which typically is even heavier than the standard heavy dose used in the 3 doses) with 1 stem cell transplant is enough. This study will do everything almost the same. Cade would receive the first three doses of chemo just the same, and then they would repeat an MRI. If the MRI still looks great then he moves forward and it becomes a completely randomized computer driven trial. Cade will be selected to either go on to receive 3 doses of heavy duty chemo and stem cell transplants, just as the initial therapy would have been. Or he would be selected to go on to only receive the 1 dose of heavy duty chemo and stem cell transplant. After treatment is complete in either bracket he ends up in, they continue to follow MRI’s every 3 months. If at any point a MRI showed evidence of new disease, then we would move on to discuss alternative treatment options for chemotherapy and/or radiation. We pray it will NEVER come to this regardless of him getting 1 or 3 high doses. If after the 3 initial round of chemo, the MRI was concerning (which would be more so for cases of kids who did not have full tumor resection and/or aggressive forms of medullo) then the study goes in a different direction and they have surgery to remove more tumor if necessary and get 2 more regular rounds of chemo and then I believe the standard 3 high doses following that. If I understood it right. Again, we hope to never go over to this side of the outline that was drawn for us. Dr Lulla informed us that Lurie’s is in the process of getting approval to begin the Headstart 4 trial at their hospital, but it unfortunately is not there quite yet. So they cannot offer this option to us. They’re still in the regulatory phase of it all and it could be months before they would begin it there. He said, however, that it was being done at Children’s Hospital in both Milwaukee and Madison if it was something we were interested in. He would look in to this and then call us back by the end of the day to let us know our options.
Chris and I spoke about it and are both feeling like we want to go in to the Headstart 4 clinical study. We feel like if he is chosen randomly to only receive 1, then great. He could be spared 2 rounds of harsh medications, treatments, and side effects. Two rounds that he possibly wouldn’t need. His tumor is not showing to have aggressive cells, so we feel like this study could be good. If he isn’t chosen for the 1 round, then it’s really no different then the treatment he would have received anyways at Lurie’s. He would go on to receive all 3 rounds of the high dose chemo. This is scary on the other hand if you think about it because it’s a risk. If he gets selected for only 1 round, is it enough? Will it be enough for him to beat cancer? When I think about it, I am calm. My heart may beat a little faster for a few seconds, but I feel like God has gotten us this far. We anticipated starting his treatment yesterday (which Dr Lulla also thought was crazy. He said he personally would have never allowed him to start only 2 weeks after brain surgery). The unexpected change in treatment options led us to go to Lurie’s and meet Dr Lulla. Had we not done this, we would have never learned about Headstart 4 even being an option to us. Dr Agrawal had told us there were no clinical studies currently open for us at this time. I feel like everything happens for a reason. I feel like we have gotten this far for a reason. We learned of this opportunity for another reason. If God feels like my sweet boy can beat this with 1 heavy treatment and be spared the additional toxicity, then I believe we will be chosen for the 1 treatment. If not- if he needs all 3 heavy rounds, then we are chosen for 3 rounds and that’s that. It ends up being no different than our original treatment plan. We are looking at it and hoping it is a win-win type of situation. It is all in God’s hands. It has been all along. And he has brought us here.
Dr Lulla called us late afternoon yesterday to inform us that there was room for us to enter Headstart 4 at both hospitals and knowing how close we are to Milwaukee, he felt that if this is the direction we want to go, that this would be a great option for us. He went on to say the doctors at Children’s of WI Milwaukee are excellent as well and that he would never guide us in a direction he didn’t feel comfortable with or that he felt wouldn’t be exceptional care for Cade. He said if they had the Headstart 4 running at Lurie’s he would be encouraging us to be part of it and believes it would be a great treatment option for Cade. Regardless of which direction we go, his chemotherapy will start the week of 7/16. All the teams have sent everything over to the team in Milwaukee and our pediatricians office is working on the insurance battle of referrals and such. Dr Knipstein is the oncologist there and he called to speak with me today to let me know they’re working on everything and ideally hope to be able to meet with us on Monday afternoon. If everything goes well, we will have to get the ball moving quickly as Cade will require many things to be done in order to begin the trial. All tests have to be done within 21 days, which he will fall out of the range with now or by early next week since his stuff was done between June 13-19. He will need a repeat MRI of the brain and the spine, a study to test his GFR to monitor his kidney functions closely due to the nature of some of the chemo medications, a hearing test, the lumbar puncture to check for any diseased cells in the spinal fluid, and then the placement of his line for treatment. So now we wait. Dr Lulla assured me that waiting is OK. He is not concerned with starting his treatment on 7/16. He knows it was a concern of mine. We wait and hopefully meet with essentially a third team for a third opinion on Cades case and treatment course. Third time is a charm, right!? 😊
Today is a beautiful day. A relaxing day and we are enjoying the fresh breeze throughout our house. We spent the gorgeous morning having our pictures taken by my sisters incredibly sweet client, Kristen Cashmore. I don’t know if you read these updates Kristen, but thank you again!!! It was so incredibly nice of you to do this for us. You were so great with them. I cannot wait to see the pictures when they’re ready.
We ask you all to please continue to keep him in your prayers! Your shield of strength has done wonders thus far…keep up the great work prayer warriors!! Xoxo
Our Warrior Journey 