Hey Army, 1/11/17 I know that it has been a while since the last post. I would like to apologize for that, but I hope that as this blog unfolds you might see some of the reasons that we...
Hey Army, 1/11/17
I know that it has been a while since the last post. I would like to apologize for that, but I hope that as this blog unfolds you might see some of the reasons that we have missed the last few weeks of posts.
First off Merry Christmas, and Happy New Years!
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| Merry Christmas from Atticus |
Can you believe that it is 2017 already!?!?!? It seems so surreal that we are here already and even more so that our crazy little family has lived here in Seattle for close to 5 months! It was pretty funny this morning as Emmie and I sat down and reflected that we have been here in Seattle much much longer then we ever lived in Pullman, where technically our house still awaits our long over due return. Some of you may recall, but for the rest of us we only lived in Pullman for 3 measly weeks when we found out about our son's tumor, and have been in Seattle ever since.
Well, wow, I don't really know where to start on the month of December....... I guess surgery. Surgery went fantastic in spite of our worries, and our little warrior recovered fantastic as he seems to do. He really is quite resilient in that way, we feel that we have been so blessed. We were in the Hospital throughout that weekend, and over his birthday, and were subsequently discharged on Monday. Chemo was set to start on that Thursday for our first of 3 cycles of what they have termed "consolidation".
I feel that a little bit of background info may help shed some light for all of you that aren't living this each day as it may be a bit confusing. Our treatment comprises of 6 cycles, and two phases. We have finished the first entire phase, and now have entered the last phase...... consolidation. This phase was developed primarily by the chief oncologist here at Seattle Children's in leu of using radiation. As a general practice radiation is avoided in young infants and toddlers if at all possible. Radiation is, however, very effective at destroying any left over ruminants of cancer left in tissue, as well as those cells that may be floating around from surgery. So, this consolidation protocol was developed to address that issue.
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| Giving Dad kisses |
Really it makes sense if you think about it. The goal of surgery is to remove the tumor, well at least what parts you can see. After all the hallmark defining principle of cancer is that it ignores cellular boundaries and invades other tissues. So typically when a surgeon plans his approach it involves "margins" or in other words to take enough surrounding tissue around the tumor to catch all of the invasive parts of the cancer. As you can imagine the brain does not afford much wiggle room to have sufficient margins. And thus consolidation was born.
Our protocol consists of two different chemotherapy agents given over two days. The main one is called thiotepa, and let me tell you it's a beast! Most of the ones we have used up to this point have been excreted through the urine, and so we have had to be on a lot of fluid and diuretics to help make sure that there is no damage to the kindness or bladder. Thiotepa in contrast, is excreted through the skin. So... On comes the baths! And boy did it keep us busy. We had to bathe him 4 times each of those 2 days and for 36 hours after. Each bath time we had to change his cloths and bedding. Then once each day all of the dressings for his central line, and for his feeing tube. Those of you here that have been through a central line dressing can appreciate the task of doing this each day on a toddler.
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| Oh the baths!! |
Once we cleared the 36 hour mark, we had a day of rest before we did the stem cell transplant and his nulasta shot. Atticus of course handled it like a champ! He was however, quite nauseated and was throwing up pretty often. We had him on 4 different anti-emetics (vomiting) medication to try and help, but to no avail. But as a side note, if anyone needs a professional throw up catcher, I think I could help! Haha. I have become quite good at catching that throw up while holding his feeding tube in even in a sleeping stupor at 3 in the morning. There is nothing worse than having a a vomiting toddler, that you then have to put a feeding tube back in! It is no fun! But, we made it through and left on Monday evening after we finished everything with his stem cell transplant. In between cycles 1 and 2 we had our stem cell aphesis or collection, and this is what that was for. He now gets a form of auto-transplant (getting something back from him self) of his white cells. With how aggressive this phase is, it is quite likely that his numbers would never recover if we didn't have these cells to give him. We are so grateful for modern medicine!!!
But, we made it through and by the end of the three days of having to do this we were pros! The following few day after the stem cell transplant Atticus was pretty nauseated, much more then usual after chemo. I was a bit concerned about him getting dehydrated and he was looking quite pale. I called on Wednesday and they said it is still most likely from the chemo and if he is still just as bad in the morning to call. So Thursday morning came and sure enough he was still throwing up in spite of all the medication we were giving him. They had us come in and they ended up admitting us to help him get rehydrated and get on top of his anti-emetics since there is no point to continue giving him medication that he will just throw up! Haha. In the hospital we can at least give it to him IV so that should help.... The plan was to spend a few days and hopefully get out Saturday (Christmas Eve) so that we could all be together as a family.
We actually had a GREAT holiday planned!!! Emmie's whole family planned to come for Christmas and I was able to find a big house that we all went in on to stay under the same house. We were very excited!!! We had just a great plan, get loaded up, he can get his blood, and platelets while we were there, and we would be out for Christmas!!!
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| The other kiddos had great fun with the cousins!!! |
Oh how our plans changed, and what a difference 24 little hours make. By Friday morning Atticus had spiked a fever, and was so so very sick. In fact, he didn't even wake up at all Friday or Saturday. We were started on some antibiotics when his fever spiked early Friday morning, and by Friday afternoon he was so sick the doctors ordered an abdominal X-ray. Well turns out, he had pneumatosis (gas found within the intestinal wall) and typhlitis (inflammation of the cecum). Pneumatosis is especially concerning as the gas is created as a by product of bacteria that has penetrated the intestinal wall and can, if left unchecked, end in a ruptured bowel. Which is NOT a good thing and can lead to many other complications.
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| We actually ended up hitting 105!!! We had towels and such trying to cool him off. |
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| We hated seeing him so sick, and not able to wake up! |
Usually your immune system will keep the bacteria that is normally found in your system in check. However, this last chemo cycle was so rough that there were no "guards" left at the gate and the bacteria was able to make it though. First order of business was to stop all food and liquid to the gut, and cut off the supply of food, and other such things to the infection. We had to replace the normal feeding tube with a replogle tube, which is very similar but a bit bigger and more stiff then the other one, and it allowed us to hook him up to a suction system to pull everything out of his stomach. And OH WOW... the stuff that came out. It was this thick, dark green crap that I just felt sooo bad there was in there in the first place. And all of the sudden it totally made sense why he was so nauseated!!!
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| This was just a little bit of what came out of his stomach!!! it was gross. |
So, a long story short we spend 2 entire weeks in the hospital recovering. He was put on complete gut rest and was put on a TPR (total parental nutrition) diet which is given completely through IV. After a week of that we spent the next week regaining his strength and trying to get him eating again. It was quite the process. We had a few really scary nights filled with extremely low blood pressures and high heart rates, as well as and entire 48+ hours that he didn't even wake up. Luckily he was able to pull through and two weeks from when we were admitted we were finally able to get out of the hospital!
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| Atticus loves doing little coloring projects, and going to song time! |
As soon as we made it home we had our own little belated Christmas for Atticus and he was finally able to open his presents. I would like to say thank you so much for everyone that helped us this Christmas by way of presents, prayers, thoughts, and phone calls. All of your support has been so heartfelt and we have benefited from it so much this holiday season in spite of our trials. Christmas was so special to spend with family, and we were still able to share it with our little gold warrior.
There will be some big changes coming to Atticus's treatment protocol in the coming weeks, and we will keep you updated when they are more concrete. The primary reasons are because of how hard this last cycle was on him, and the possibility of him having Li-Fraumeni's among other things. We will touch on those in the next post as we should be hearing back from the genetic testing any day now.
Thanks for all you support
#AtticusArmy