We are still home. After Violets round five I noticed that she just wasn't doing well. By that I mean, her color was bad, her energy was very low, she cried a lot, and seemed uncomfortable often. She wasn't eating or sleeping well. I mean every round is hard to recover from, and the chemo she was getting is known for a delayed attack. But, this was different. My mommy instincts were screaming at me that she had had enough. And as I mentioned before the longer we are there, the more we witness and realize all the dangers it gets scarier and scarier. In addition to this, Violets dearest friend William as I mentioned in my last blog, was REALLY suffering. He came in for his last round and we saw him in ONE day just crash and burn, and it terrified me. I was beginning to see and learn that these kiddos do have limits and if you push too hard sometimes the "treatment" can become the demise.
When we determine that Violet is strong enough for the next round, every time she is sent thru a series of tests. One of the first things they do is test her hearing to make sure that the chemo has not damaged her hearing, which by the way would be permanent. So far we have not seen any hearing loss, however she is at risk for five years and will continue to be tested. After the hearing screening her kidneys are tested. This consists of taking V down to a room where there is a table under a large device. When we arrive they have me lay V down on the table and they proceed to strap her down, in a giant Velcro papoose. She screams and tries to break free, screaming "please no" and "help mommy." Which is heart breaking enough, but then they bring in a syringe filled with a radioactive material, they find a vein, or attempt to find a vein, it usually takes several pokes...all the while Violet is still screaming, making direct eye contact with me, terrified and pleading for help. After the radioactive dye is injected in a vein, my sweet girl is left strapped to the table for 15 minutes. Sometimes she calms down and surrenders, sometimes she doesn't, but I usually break down and cry with her. After the fifteen minutes are up, I can pick her up, she is usually shaking and sweating, exhausted. After these two tests are passed we are admitted. She is put in a large room with several other cancer kids and they hook her up to an iv to start fluids and they ask us the same questions they do everytime. After several hours we are transferred to a room that will be our home for a least a couple weeks. Violet is attached to an IV pole for at least 4 days, which doesn't sound that bad, .....unless you know Violet. She is a VERY active almost two year old. Imagine that you put a tube in a curious puppies heart, and then attach that tube to a stake in the yard...you get where this is going. I almost literally have a stroke every time. She has no concept of how dangerous all of this is. She just wants to run and explore while she still feels good, because the chemo doesn't make her feel like snot right away. So for several days my life consists of trying to take walks with her, she will take off at a full sprint while I literally jump to keep her IV pole close behind her so that the tubes into her heart aren't strained to the point of snapping. She jumps in her bed, tangles the wires, runs away, trips and falls. It's a nightmare. And the tubes are on her 24 hours a day for at least 4 days. During the first day several nurses come in dressed in stepped down hazmat suits for fear of spilling the substance (chemo) they are carrying on themselves as it is dangerous and will burn them, and they proceed to hook this up to tubes that go directly to your childs heart. You watch knowing this is the only treatment, hoping for the best. Violets vitals are taking every four hours, around the clock. She is given baths every six hours around the clock for the first four days. They come in in the middle of the night in sanitary suits and wake her up by scrubbing her down and replacing the dressing over the tubes in her heart. She wakes up afraid, unsure of where she is, they finish up and leave but by the time I get her calmed down she has to have meds to combat the effects of the chemo, the meds are every two hours, so despite being terrified and exhausted, there is no sleeping. Please remember, I LOVE and adore our nurses and I don't mean to sound like I am bashing them. They are only doing their job, and they do it well, but I just want everyone to know what it is REALLY like. After the first five days Violet is given another drug to help her recover, while this drug is administered she is hooked up to a heart monitor, an IV, a blood oxygen monitor, a digital thermometer, and blood pressure cuff, for at least 16 hours. Which means she is confined to a chair in my lap. Also around this time, the vomiting starts, it is horrible to watch, and you press a button and they come and help clean up and give her even more meds. Her appetite drops off, her color changes, her breathe smells like she drank drain cleaner. What little bit of hair she has grown falls out in clumps. It's horrifying. Most kids develop fevers and infections, which are often fatal. Doctors bring in consent forms for different meds, and the have to tell you all the potential hazards. It usually sounds something like this...your child is very ill, in order to survive we need to administer this drug, this drug may cause fatal side effects, sign here. It is all scary, all the meds have terrifying hazards, and you sign and pray. After the chemo is administered you sit for weeks terrified every minute. Any germ or fungus can attack while your child is weakened. You become paranoid. You pass other terrified parents in the hall. You hear the child in the room beside you crying and screaming. You leave the room for several minutes to clear your head, and the nurses ask you to return to your room, one of the children on the floor has passed away and they will be moving the child shortly, please stay in your room. This has been my life since January. At least two week stays every time, and then you are discharged, you are supposed to transition your child back into a normal life, so they can recover, and then you start all over again. No where feels like home. I isolate and shut down. I wake up several times a night in the midst of a panic, not remembering where I am, knowing something is horribly wrong but being so foggy I don't remember exactly what it is, oh yeah Violet has brain cancer, panic sets in. I'm awake again. Right when you feel like you are starting to breathe and function again, it starts over. We have seen losses with every admission. We have seen friends go to ICU in critical condition. It is to say at the very least horrific.
So, when I saw my little beautiful girl struggling so hard after round five. I thought, I have to tell them that I am scared, I have to tell them I know she's strong but she may have been hit too hard. Once a week Violet has to return to the hospital even when we are home to have the dressing on her chest tubes changed, which she hates and cries about. They also check her body to see how well she is recovered. So, when we had to go back to check these things, after consulting with Charlie, I just asked. I said "we have done five rounds of high dose chemotherapy, Violet is really struggling to recover, how did you guys decide we needed to do six rounds, and how important is it that we do six??" I was expecting to get a very long explanation about all the planning and research and how vitally important it was....and the response was "We just chose six because that's what we do, five isn't proven to be more or less effective than six, we have attacked Violet with very strong chemo every round. Her type of cancers prognosis is mainly dependent on surgery." Violets type of cancer is very rare. It is less than one in three million. So, there isn't a lot of research. However, what research they do have shows that if the tumor is COMPLETELY removed with surgery her chances of survival are 86%, which is pretty good. Well, Violets neurosurgeon operated on her for 16 hours and told us he used a microscope on her brain to make sure that he TOTALLY removed it, and that it was very distinct so he felt certain. In addition to having the tumor completely removed we also followed up with five, very aggressive, high dose chemotherapy rounds. So.......round six was up to us. They didn't have a strong argument. The response to how vitally important is round six was literally a shoulder shrug.
So, after consulting with ALL of the doctors involved and talking about it as a family. I think we have decided to forego round six. Violet hasn't had chemotherapy since the end of May, and she was in the hospital on Monday to have her dressing changed and to have her body tested for recovery and they found that after 8 weeks of recovering, 8 weeks after her last dose of chemo, she still wasn't recovered enough that if we did decide to proceed with round six they wouldn't allow it at this time, because she is still struggling. The chemo has attacked her entire GI tract. Leaving ulcers and sores all the way thru, she screamed with every poopie and potty. As a mommy my head is spinning. I have been in survival mode for so long I can't imagine being done with chemo. Violets hair is starting to grow back, her beautiful eye lashes are returning. I look at her and she's starting to smile and play and laugh again. I think we are done with chemo. So, what does that mean....that means that on September 4th we will take Violet to the hospital to be sedated for an MRI of her brain and spine, and as long as that comes back clear like all the others have, the tubes in her heart will be removed shortly thereafter and she will ring the last chemo bell signifying the end of treatment. We will be scanned every three months moving forward, as long as those continue to come back clear after the first year, she will get scans every six months, then every year for the rest of her life.
The scan that they do, the MRI, she has had them every two weeks for the last several months. They weren't sedating her for these last scans as they were doing them quickly and the risks of sedating her were too great. I went with her literally, on the last one. I rode on the table into the machine with my head on her chest, and I cried with her. It's REALLY scary and confined in there. It's soo loud and terrifying. She shakes and cries when she is awake and I don't blame her, part of me is devastated that this will become her normal as this test will be a part of her life forever, but another odd part of this disease is all the things you become okay with as long as your child is still here.
I am so full of mixed emotions. I am sure all of you understand how elated I am at the thought of being done with chemo. But it feels unreal. I have spent everyday with her for her entire life, and everything feels different now, everyday is truly a gift. We get up together everyday and make everyday an EVENT. That has been a blessing. I am sad, at leaving our friends and nurses, at leaving the security of the hovering nurses and doctors. I am terrified of September 4th. Scan week as any cancer patient can tell you is hell. You get the scan, then you wait....you wait to find out that you are fine, go about being "normal". Or you get a bomb dropped on your heart again, the cancer is back, or that theres nothing to be done. The time spent waiting for that answer is agony.
We will continue to cherish every moment. I will continue to fight and advocate for all the little ones still in the battle. I know that pediatric cancer is nothing that anyone wants to even think about, it is a nightmare and more than anyone can bear. But, it's happening EVERYDAY to SOOOO many little ones and families, and saying I can't think about that, or it's just too much isn't fair. Nothing will change if we don't all make ourselves aware and help. I never had any real consciousness of pediatric cancer before this happened. My eyes are wide open now, and I am forever changed.
So many have asked about our dear sweet William. I am happy to report that he is home, however he is still very much in the fight. He came VERY close to losing his battle. It was a loss that I knew I couldn't bear, and I am so glad that he pulled thru, although he isn't without significant battle scars emotionally, physically and mentally. Please continue to support him. He was such a vivacious little man, full of spunk and love, and I saw him just yesterday and saw how affected he is. The last round of chemotherapy dropped his immune system so low that a fungus attacked his lungs, eye and brain. Causing significant damage. He fought so hard, and was able to go home, but he is at the hospital every other day for treatment for the fungus. I hope that his amazing family doesn't mind me posting information about him, they must know that I love him dearly, and them as well, and that I only share to help promote awareness and support. Here is a picture of him after he was released when Violet and I went to visit. Cancer is BRUTAL. But William is tougher. His mother and I have become dear friends. Being in this fight creates bonds that are profound. She is an amazing mother and inspires me.
Violet will be two a few days after her scan. I so look forward to getting her tubes removed so that she can take a nice long bubble bath. A luxury my sweet girl hasn't had in 8 months now. I will weep watching her splash and play. I also look forward to seeing what her hair will look like. I can't wait for the first barrette. I will again cry with gratitude. This experience has taught me to appreciate everything. Every tantrum, every smile, every hair and lash. We continue to pack as much fun as we can into everyday. We can't wait to see our friends and family again that we haven't seen in so long. We can't wait for them to see the child that Violet has become. I look forward to healing a little emotionally. Knowing that the chemo maybe over has caused me to slow down enough that the trauma of all of this has set in more. I had been so busy fighting that I didn't have time to reflect and process, it's scary. Now that things have slowed down I'm really dealing with all of it. I'm not ashamed to say that I am in counseling weekly and that I am reaching out for help.
We will be taking a vacation in October, a very dear friend has offered her beautiful cabin in Tennessee. I can not wait. I am so grateful to her for this much needed break. I am hoping to get back to work, doing what I love. I am working at bettering myself on every level. I feel like we have been given so much and I can't wait to pay it forward. We are so enormously grateful. I will try to post updates as I can. Here are a few more photos of our adventures as of late. Can't wait to continue to explore, play, and cherish every minute.
