Friday, June 17, 2016

The past couple of weeks...

We knew the symptoms of radiation would catch up with Hank eventually. We hoped and prayed they wouldn't, but they came all the same. Hank's little face became more reddened with each passing day. Some from inflammation, some from the friction caused by the radiation. Sores in his mouth began to  form first. Little blisters on the interior of his lips and cheeks. His lips dried and began cracking and bleeding. then the nose bleeds began and the large blister at the end of Hank's tongue. Between the blisters and swelling, his speech sounded slurred and at times we simply could not/can't understand what he says. Last week, sores emerged out of the redness of his face. A sore near the top of his nose ridge and then around his nostril. It was heart wrenching to see his face slowly evolve into that state of distress.
His little mouth was very sensitive to foods. Either because his taste buds changed, or because the food hurt his mouth/blisters. Last week, and a couple weeks prior, all Hank ate were mostly cherries with milk, goldfish, and apple slices. This week, he has fixated on packaged peanut butter crackers, lots of milk, and pancakes. We have been successful in getting him to eat a couple other random things.
While these were difficult, the hardest part was probably that Hank was an emotional wreck. After being sedated each day for radiation, he comes home a combination of sleepy, hungry, and just plain whiney. He whines about everything and in asking for everything. I realize the kid is going through hell and I understand why he is whining... but Oh how it grates on the patience and nerves. It has made me a rather up-tight mom lately.
Poor Taylor is exhausted. Having to get up early every day to get Hank to Irving for treatment. As we've progressed into the treatment, the start time has slowly creeped to earlier times. Today Taylor left extremely early and upon arrival, found out that the machine is not working and drove all the way home to await a phone call for him to come back in. I feel so badly for him having to go back and forth. To wake so early and drag a tired, cranky kid to something he doesn't want to do. Taylor then has to turn around and bring a hungry Hank, who is not allowed to eat until after treatment home... it is just rough.
These are the rough points in our life right now... and they are the more visible things. But there are joys too. Like Lena talking up a storm, constantly adding new vocabulary to her sentences. She is also finding new items to push up to the counters to get access to all those forbidden treasures she never had access to before. She loves sitting on the counter and having me fix her hair, or brush her teeth. She loves baths, popsicles, dancing, being tickled, brownies, her baby doll, and telling Hank what he can and can't do.
Ruby is scooting on her tummy, rolling over, and smiling some of the most adorable smiles. She jabbers aways, sucks on her toes, and fits into some of her sister's clothes. Ruby has been such a joy to us and especially to Hank. He absolutely adores her... and when anyone holds Ruby, he assures them they WON'T be taking Ruby home with them. :)
Corin has spent the past week and a half with my parents... both at a family reunion in Iowa on a farm, and in the pool at their home. He is loving it and probably never wants to come home... but we miss him. We miss his goofy knock knock jokes, his sweet moments with Lena, and those times that he and Hank get along and play Legos so well together. There is a lot I miss about him actually.
Hank is becoming really good at Wii Star Wars. One of the aspects of radiation is that his port has to be accessed all week long for the anesthesiologist, so Hank can't run around all week. So in order to keep him "inactive," we let him watch lots of shows, play a bit of wii, read lots of books, and encourage lots of lego building. It has been hard not letting him go outside. He wants to have water balloon fights and play in the sprinkler. He wants to go swimming and run around like all the other kiddos... but unfortunately, it has pretty much rained every weekend, which is when he would finally be able to do those things. BUT... His last day of radiation is next week. Hopefully the machine won't have anymore problems. Hopefully he will get his treatment today, and hopefully Tuesday will be his final day of radiation. Next week for Chemo, we have the Irinotecan injections, which are the 5 day treatments that last about 2 hours. So while radiation comes to a close, Hank will still have to remain accessed the entire week, again. We are ready for some summer water fun after that! Thank you for all your prayers. While this time has been really rough, it could have been rougher. We were also blessed by you all financially, and Taylor didn't have to worry about trying to work throughout this season of treatment. HUGE BLESSING! Thank you all! We could not have walked this journey alone.
Here is Hank last week...

Wednesday, June 1, 2016

The halfway mark

By the end of this week, we will left with two weeks of radiation... over halfway done. Hank has been doing well, especially since he has had the past two weeks off from Chemotherapy. The doctors plan to have a two week break after every 13 weeks of treatment, in order to evaluate if they keep his treatments as is (if they are working well), or if there is need to tweet/increase treatments. So far the doctors are very pleased with the way things are going. Hank is responding really well to Chemo and the doctors have decided to leave his treatment as is.
After radiation, we will have new scans (MRI/CT) to determine how well the cancer responded to the treatments. Hank is growing very weary of going to the doctor every weekday. He pleads to not have to go, but we bribe him out the door with various enticements. He started getting mouth sores this past week and would complain when we ate certain foods. Then this week, his lips began to swell, dry out and crack, which results in bleeding. We started slathering on the vaseline, which seems to help. Hank also started up chemo again this week. His schedule started on Tuesday, due to Memorial day, and will go through Saturday. Each day he leaves for radiation in Irving with dad around 7am, then goes directly to Children's in Dallas for his 90minute Chemo. Yesterday they got home around 4:30... so between the treatments and commute, it is a long day. Both dad and Hank were pretty worn out when they got home. With only Sunday off this week, it may be a pretty long couple of weeks. 
Corin gets out of school tomorrow (Thursday) and plans to go with dad and Hank to treatment on Friday. I am not sure Corin really knows what he is in for, but the fact that there will be Xbox involved at the day hospital seems to lure him in. Plus, if it is just going to be raining all day anyways... he might as well be able to keep his little brother company. :) 

May has been a really hard month. Between sicknesses, Hank, sad news with friends, trying to finish up school stuff, and life in general, we have been stretched thin. Endurance is a word I would request as a prayerful petition on our behalf. Strength and endurance. Faith and endurance. Trust and endurance. Joy and endurance. Endurance. 
I leave you with some pictures... note the black and white scans of Hank's tumor! I colored the tumor in yellow crayon so you could see more clearly.

                                                                    Being Silly.
 Hank wears a mask similar to this at radiation each time, while under sedation. It keeps his head still as they target the tumor with the proton radiation.
 This is what the treatment machine looks like used in Hank's radiation. It is programmed by computer, based on his CT and MRI imaging, to shoot the proton ray a specific depth in order to only treat the tumor.