Things were seemingly going as expected since my last update. Cade was seeing OT to help with some fine motor skills and as that was improving, I began to have some concerns for his legs and his walking. He complained about his knee hurting a lot, but not consistently. I know knee pain can come from a lot of things, including pain from compensation due to another issue with hips or feet. So I thought it was wise to start with PT sooner than later. In addition to that, he has been having troubles with his blood counts and has been super tired the last few weeks. His counts have been up and down and seems to be a constant struggle since all of that sickness from November through January. His new oncologist, Dr Tanaka, felt it necessary to hold his oral chemo to help his counts normalize. This has been done in the past, so we were familiar with the process. However, this time they held them for almost 3 weeks. They rechecked it a week later and his platelets were still low as well as his hemoglobin. He received a blood transfusion and his one drug, Avastin, had to be held as well. They had repeated it several days later and things were still not moving much so they chose to hold the chemo for our entire off week and then see what his counts looked like in clinic when he returned. This was yesterday. Chris actually took him to clinic because it was his day off and I went to work. It was supposed to be a simple day and we were anticipating his counts would be on the rise after this nice break from chemo.
However, his counts were worse. His hemaglobin was down again and his platelets were lower than when they were checked 2 weeks prior. Chris said that our nurse Suzie had agreed that his walking was worse and she was going to put a new order in for PT so we could do it more frequently closer to home. Unfortunately that was not the only problem noticed. Chris text me again that she felt he looked pale and we may have a “discussion” about possibly stopping the oral chemo. We were already planning to have this conversation after his scan at the end of the month because we have noticed that the oral chemos are the hardest on his body and he has struggled with them from the start and has been receiving them for 8 months at this point. The next text message was concerning- he said the NP was going to have Dr Tanaka come in to see Cade because he wasn’t cooperating following her stimulus with his eyes. Chris told me he saw the concern in her eyes. He saw it again in Dr Tanakas eyes when he came in to assess Cade. The next text I got made my heart stop. His labs are still low and it is concerning. After holding the oral chemo for this long, his counts should not be lower. Tanaka wants to schedule a bone marrow biopsy to make sure it is ok, he also wants to move up his MRI because his pupils seem a little more dilated.
Katie, our NP, called me later to fully update me on what was going on. They had to hold his Avastin again since his platelets were too low and they are giving him more blood. They were able to get the MRI pushed up to 3/13, but are still working on getting it pushed up even sooner. They were able to get the bone marrow biopsy scheduled for this Friday and that procedure would show 1 of 3 things. The medulloblastoma has spread to his bones, a secondary relapse. He has chemotherapy induced bone marrow suppression from to much treatment. Or that he just needs more time to recover. They decided to hold ALL of his chemo medications from his trial (there are about 7 or 8 total) at this time until the brain/spine MRI is repeated. They sedate him for the bone marrow procedure and will take samples of his marrow to test as well as take a sample of his actual bone to look for cancer. I hung up with her and tried to pull myself together and go back out to work. This was a lot. And it definitely was NOT what we were expecting the day to turn out to be.
I didn’t leave work until after 5pm and was so happy to get home and be greeted by all my boys. I was still trying to absorb everything from the day and trying not to completely freak out. I was putting Cade in his PJ’s and we were in the bathroom when he turned to me and I noticed a large lump above his left clavicle. It’s big, about the size of a quarter or so. I could feel all sorts of little lymph nodes around it as well as a couple in his armpits. Of course my heart stopped again and as I’m sitting there staring at this lump all I can think is he has lymphoma. Pushing hard all around it didn’t bother him whatsoever. This concerned me even more. I google it and I see bulletpoints of fatigue, low blood counts, and non-tender lump/mass, etc. Now I’m trying to talk myself off of the cliff. I took pictures and instantly called to have Katie or Tanaka paged. Katie was sweet enough to call me from home and talk with me. I sent her the pictures and she and I texted back and forth for a little bit. We decided since he was otherwise acting normal and not having fever or chills, that we could avoid the ER and just come in the next morning for them to see him and get a plan in order. That was today.
We went in to the day hospital late morning and Katie sat and talked with us for a while. I had bags packed and pillows and blankets all in the car just in case they admitted him. She was really happy to see how great he looked compared to yesterday morning. She said had he looked like he did yesterday before the blood, she would have admitted him no question. He just isn’t his normal “Cade self”. Everyone there knows his baseline, his silliness, his talkativeness. And yesterday he was not himself at all. Everyone was concerned. So how he presented today was positive. She assessed him and talked with us about the plan. They don’t know what is going on right now. There are too many variables. They’re concerned about several things- his change in walking, eye tracking and pupil size, and now this lymphadenopathy (response and swelling of the lymph nodes). She went over again why it’s important to get the bone marrow biopsy to rule out things. It will rule out whether his medulloblastoma has spread to his bones and that is why his walking is different. It will tell us if this lump and lymph node reactions is a secondary cancer of the blood- leukemia or lymphoma. It will tell us that he just has suppressed marrow from getting so much chemo treatments. Or it will show none of that and then we pursue other avenues like infectious disease and getting a biopsy of the lump. It was to hard to coordinate doing both biopsies together and they didn’t want to delay the bone marrow one, nor did they want to put him through biopsy of the lump if the marrow shows us it is a leukemia or lymphoma because then that gives us the answer to the lump without putting him through the biopsy of it. The attending that was on works with solid tumor patients and had said that given his WBC and ANC levels being high, that she would be surprised if it came back leukemia/lymphoma because usually those patients have almost zero for those counts. Katie kept saying that both of these things are extremely rare, but we still need to rule them out. I feel like I’m that person that the rare things always happen to, so this didn’t give me a whole lot of comfort. The next most important thing is to get his MRI and make sure that there is not a new spot/spots growing in the brain or the spine that is causing the walking and eye changes and explained that they don’t want to be giving chemo directly in to the spinal fluid until they are sure that nothing is going on and that is why they are holding all of his medications until then.
Our team has their tumor board meetings on Wednesdays, and Katie called me after we got home this afternoon to tell me that they discussed Cade in today’s meeting. They still have not been able to get the MRI sooner than 3/13, so they want to do a quick MRI just to give them a glimpse as to what is going on while they wait. To make sure that there is no evident new spots of concern and to make sure that there is no hydrocephalus causing the pupil dilation that would require a shunt being placed. This gave me instant flashbacks to our quick MRI experience at Lurie’s last May. They were also able to get the bone marrow biopsy moved to tomorrow from Friday so they will do the quick MRI at that time too. We will go to clinic at 11:30 for him to be accessed and get labs drawn. They are going to check his CBC again to see where it’s at as well as get cultures I believe to start ruling out infections. He hasn’t had any fevers, but I explained to her that he never has. Through all the pneumonia and ear infections he never had a fever and even through all the 6 chemo rounds in the beginning he got a fever only a few times. So I feel like he doesn’t present typical and that we definitely wanted to be sure any possibility of infection is ruled out as well. They are hoping that we can at least know whether the biopsy shows leukemia/lymphoma by Friday, but we most likely will not get full results until some time next week. Agony.
Right now we really need prayers. I’m not sure what God is up to right now, but I’m praying so hard that it is something positive. That he is trying to show us that there is an infection or simply that Cade’s body cannot handle any more chemo before it is to late and permanent damage is done. Cade has had chemo/radiation for almost half of his precious life. It’s nauseating when you really think about it. I’m praying that is what this is all for. A serious warning to stop. I’m having a hard time believing that after the cards we have been dealt- after Cade has already relapsed and been through so much- that we would so quickly, less than 5 weeks from his last scan, be having any sort of new growth or second relapse on top of all of this. And that most certainly his body would not have a complete second type of cancer. The terrifying part though, is that it happens. Pediatric cancer is so underfunded, the treatments they receive or so ancient and toxic and made for adults, that we are told that the chemo drugs our kids receive can cause secondary cancers later in life. How screwed up is that!? Please pray hard for us that this is not the case for our sweet boy. Pray that we get nothing but positive news. Answers that have simple and curable solutions. 🙏🏼 🙏🏼 🙏🏼 🙏🏼 🙏🏼 🙏🏼
Our Warrior Journey 