Saturday, December 26, 2015
Our last post was about Mark heading into Round 6 with things looking pretty good. And true to hopes and expectations, he made it through #6 pretty well. However after chemo was over, he hit a frustrating bump in the road where he once again tested positive for C Diff, and also was hospitalized for a new infection: MSSA.
You may have heard of MSRA (Methicillin-resistant Staphylococcus aureus), the better-known and more dangerous brother of MSSA, but with MSSA the R for Resistant is replaced with S for Susceptible. The symptoms are no fun, he had a high fever that took longer to clear up, mouth sores, serious swelling of his face, and a variety of other problems that kept him admitted for about a week, and he was visibly tired when finally released. But as the S for Susceptible states, this infection was susceptible to the antibiotic Methicillin and treatment was able to fight it off. Mark was on heavy treatments at home for a long time, including IV administration of antibiotics, it was pretty rough.
Following treatment, Mark's NG tube had a problem and we removed it. Staff wanted it back right away if Mark wasn't able to put on weight, and Mark wanted to keep it out as well. For a couple of weeks he was able to just barely make the grade to keep it out, but it was a struggle, and at one check in he had lost weight again, so the tube was put back in. Mark was not thrilled about it, but I think he reached the point of resignation and relief, that he would not have to try so hard to eat. We only run it at night, so he doesn't have to lug the pump around by day, and it seems to be working well. His energy level has rebounded dramatically since the end of chemo.
Now we begin the recovery and rehab phase. Mark is still underweight, having lost so much muscle mass while laid up for almost a year, and his coordination is hampered by both the inactivity as well as the chemo and radiation, but he is back to dressing himself, and it was a big day when he tied his own shoes again. He doesn't seem to have lost his touch at video games much, and they are sort of good for his fine motor control of hands and fingers. He used to appear frail, stooped, and had some tremors when standing, but now he stands up straight, alert, and firm. He has to be careful when navigating hazards on the floor, but the days of a walker or wheelchair are well behind him.
Last week we were privileged to be granted a stay at the Alexandra Ellis Caring Cabin, a peaceful and well-hidden retreat residence on the Oregon Coast just outside of Pacific City. It has a separate activity building for the kids with pool and air hockey as well as a couch and entertainment center, and lots of toys, and it also has a bedroom above it. The main house is a gorgeous getaway with high ceilings and lots of windows, which overlooks a small private lake outfitted with kayaks and canoes. It has a master bedroom, a guest bedroom also cross-outfitted for families taking care of infants, and a brightly-colored children's room complete with a high loft and additional beds. The game room in the house is loaded with all varieties of books and games, more than you could possibly get to in months. We were able to bring several of Mark's friends along with us for the stay, and a lot of wonderful memories were made. If you are searching for a good charity or cause to support, may I recommend this facility, operated through the Childrens Cancer Association, as a strong candidate? Being able to stay there and take a break from everything was an absolute Godsend.
When you arrive at the Caring Cabin, just inside the entry you find two river stones engraved with your child's name and the current year. You get to take one home, but the other you are supposed to place on the property, in a visible location along the path from the house to the lake. Walking this path and seeing the memory stones is a very powerful experience. You think about all of the trauma and trials you've gone through with your family and see that you are far from alone. You can't help but wonder about each of the heart-wrenching stories of despair and tales of miracles, with everything in between, that each stone represents. As you look upon each child's name, you wonder if they survived, or if this stone represents one of their final wonderful memories. I've put down a few words to try to describe it, but no words could ever equal the experience, so I will leave you with these images... I encourage you to click upon some of them to see them full size. God bless, and thanks for all your continued prayers and support.
Sunday, October 18, 2015
|Mark won a prize playing hospital bingo during his last stay.|
And now, at last, we are coming up to Mark's 6th and final scheduled chemo round, which starts Tuesday. After reviewing the audiology test results, we found out that they are reducing his chemo this round by 25% or 50% so as to not cause excessive additional hearing damage.
This led me to a question. If I had to choose between no cancer or no hearing, I think we would all probably agree that no cancer is preferred. So I asked Dr. Glover about this, about why we would back off chemo to address one problem at the possible expense of not addressing a bigger one, and ended up learning a lot more about Mark's progress, especially relative to others going through similar chemo regimens.
According to Dr. Glover, many (most?) kids getting the regimen of chemo cocktails that Mark is getting are not able to finish all scheduled rounds. You see, it is pretty common to have delays between rounds, waiting for cell counts and health to recover enough for the next round. Although Mark has been hospitalized in between every round so far, usually for fevers, he has recovered quickly enough every time to be ready for the next one on schedule. In fact, sometimes kids start out OK but as they go on through rounds, they need longer and longer to recover from each one, yet Mark's counts recovered well enough after Round #5 that he was cleared for Round #6 a full week in advance.
Worse than delays, though, are the kids whose bodies are unable to tolerate the chemo due to other damage. Some kids have to end chemo early due to organ failure; problems with the liver or kidneys in particular. The point gets reached, prior to finishing the rounds, where the chance of organ failure is greater than cancer relapsing, and treatment is stopped.
For Mark, as Dr. Glover put it, he has done so well through these five rounds, and his most recent scans look so good, that the "tumor board" at the hospital feels that there is greater risk to Mark's quality of life from hearing loss than there is from a cancer relapse by backing the final round down a bit.
This is where I stop and take a breath and look around at how far we've come. A little less than a year ago when we found out, the initial diagnosis was that Mark's tumor was inoperable. Our daily routines of life stopped, and every other moment was a heart-wrenching realization that everything had changed. After it was determined that surgery was an option to try to get ahead of it, 5-10 year survivability was pegged at around 50%. Mark survived a very scary lengthy brain surgery that required two neurosurgeons, who were able to get 70-75% of the tumor out and buy us a lot more time. From there, we were able to get Mark approved for advanced proton radiation therapy in Houston to limit tissue damage from "exit radiation". Halfway through chemo, the tumor was no longer visible on the MRI scans. We've become "accustomed to the water" and it is no longer a shock that keeps us from functioning. Through it all, Mark has been strong and resilient, and has stayed healthy enough to remain on schedule, and I am sure this is largely because of his great attitude. And now the risk of a cancer recurrence has diminished to the point that the staff is more concerned with his hearing. Praise God, can I get an "amen"?
I had to reflect also on the serendipity, the blessing, of how this was discovered. If Mark had not been the crazy outside-barefoot-with-a-hatchet kid that he is, the chances of him clobbering his head while playing would have been greatly diminished. Without suffering that concussion, his body would have compensated for the tumor without us aware for much longer. And if that tumor had manifest nearly anywhere else in his brain than in front of the cerebellum, it would not have blocked the CSF drainage to generate headaches quite so early, again discovery would likely have been long delayed.
While these are times for hope and appreciation, we also need to remember that this type of cancer is a very nasty variety. At some point down the road, recurrence is a good possibility. For that reason, Mark will always benefit from your prayers and thoughts, and especially from your direct encouragement. Mark will spend the rest of his life having to pay attention to what he eats, to take care of himself and exercise well, and will need to undergo an MRI about every six months to keep an eye on things and give us the best chance of stopping a future problem.
This journey has been difficult for everyone in the family, and sometimes our frustrations and weariness causes some friction at home, but I believe this has also brought us closer and given us a greater appreciation for every day and the gifts we've been blessed with.
This journey has also gloriously revealed to us the unimaginable lengths to which our friends and family will go to help us. Childcare, meals, hugs and messages of support, financial assistance with the expenses not covered by insurance, transportation, prayers... I am sad to know that I will never be able to remember every instance of love and compassion shown to us so that I can reward each one with a thank you note and personal appreciation. Instead, what we can do instead is make sure we pay those blessings and gifts forward, to help everyone we can in their times of need, with whatever it is we can do to help. I think we always considered ourselves the giving of help type, but these months have taught us so much about how much more we can do, and we will.
|Unbeatable attitudes go a long way.|
Remember Mark's wishes, to remember that the people you meet every day are not "NPC"s (non-player characters in a game), but are each real people with their own real life stories, with real problems that we don't know about or understand, but who still deserve our compassion and respect. Practice random acts of kindness and forgiveness. Be nice.
Thank you for reading.
Tuesday, October 6, 2015
Round 5 went by so uneventfully that I never really knew what to post about, but I was feeling the long delay between updates, sorry it took so long.
The chemo is taking its toll, no doubt, but we seem to be getting used to the routine. There were no surprises or complications during Round 5, it was in on Tuesday, out on Friday, and feeling good that - so far - Mark has held up well enough that they have not delayed any treatments, though the margin of tolerance was pretty thin this time.
As per usual, however, Mark had a fever start up the week after Round 5, and I brought him in last Wednesday. It cleared up quickly, Wendi and I switched out, and Wendi brought him home on Friday. It popped right back up though, and Mark was admitted again less than 12 hours later.
The hospital is great, the staff is the best, but Mark just wants to be home. Friday night was tough, and he broke down with Wendi about having to come back in again.
Right in the middle of the whole show, my car broke down on Saturday morning on my way to work, and it is still in a parking lot between work and home. But we switched again and I'm in the hospital with Mark at the moment, so I don't exactly need it right now, haha.
This morning Mark had a routine hearing test, to measure how much loss the chemo is causing, and the results showed a pretty sharp decline. Not unexpected, but still disheartening. He's not going totally deaf, but hearing aids are now pretty much a given when this wraps up.
Times like these are, as I described to one friend, adventurous tests of adaptability, and so far we are doing OK with it, but the weariness is creeping in.
We ran into Mark's neurosurgeon today, which was a nice unplanned visit. He repeated what we heard last time, that Mark's last set of scans looked pretty good, so there's that.
One more round to go. With luck and good fortune, and with the help of your prayers, we are hoping to be headed towards normalcy before his birthday and Christmas. At least what our new normal is becoming.
Thanks for reading.
Saturday, September 5, 2015
September 1, 6:37PM
Just realized we left everyone hanging last week. We ended up spending an extra night in the hospital so a CT scan could be done. The CT scan showed no air! The doctors weren't exactly sure what happened, but we are so thankful for everyone's prayers. We were able to come home Saturday afternoon. Since then Mark has been doing well - he had even gained half a pound when he went in to his appointment today!!! His platelets were quite low today, so he had to have platelets. He had quite a bit of pre-medication and did fine. He even managed to get some homework done today. We are so, so thankful for this period of sunshine. Love you all!
September 2, 9:21AM
Some have asked if Mark will be back in school following treatment. Actually, he is back in already, as the school year has begun. We are keeping him in motion so that rehab back to normal speed after Christmas won't be such a marathon.
September 2, 4:44PM
Back in the hospital for what seems to be our requisite post-chemo "unplanned" admit. Mark woke up not feeling great. Meds helped a bit and he made it through the first part of the school day before he started to complain about pain in his stomach and head, followed by my noticing he felt warm. Fever of 100.9 around 1, 101.9 at 2, so they told us to come in. It was up to 102.8 when we got here. His counts are low, so it's an automatic 48 hour stay.
September 5, 12:10AM
Still at the hospital. Mark's oxygen levels dipped on Thursday and required "blow by" oxygen for most of the day. Friday his levels were better, but there was crackling in his lungs, so they ordered an x-ray. The x-ray was clear so they gave him some medicine that encourages the release of extra fluids from the body. He had what is known as wet lungs, which is when they flood the body with fluids to help bring the fever down, etc, but some extra settles in the lungs. They sound clear now, and although his oxygen levels are not back up to his typical 99/100%, they are much improved and considered passable. The doctors said there was a slight chance we might go home on Saturday, but more likely they'd keep us for the weekend in hopes that his blood counts would start coming up.
As of this afternoon, Mark's fever bumped back up over 101, so Sunday or Monday is presently his next reasonable shot of coming home to recover before Round 5.
Friday, August 28, 2015
An abdominal x-ray was performed yesterday that found no obvious abnormalities other than a little acid reflux, which was more or less expected. This was part of an overall investigation to see if there was something unknown contributing to his difficulty eating and keeping food down. Since that came up with no obvious causes, other tests were planned that didn't get done until today.
During an ultrasound done this afternoon, small air pockets were found around the veins in his liver. We don't know much about what this means yet except that the ultrasound doctor indicated that in some cases it can be very serious depending on what caused it.
So, in order to investigate further and get a handle on the situation, Mark is being scheduled for a CT scan tonight, pushing his return home out by at least a day.
Spoke too soon about how easy things were going. This has the potential to be a very serious complication, but we hope and pray that the outcome is otherwise.
Thanks for reading.
Thursday, August 27, 2015
Contrary to expectations it feels like the chemo rounds are getting easier. Perhaps it is because, as we were told before, the first round or two can be bumpy as things are figured out, like what meds work, how diet goes, and learning to navigate the treatment in general.
Mind you, although his Round 4 chemo has now been administered, there is probably a complication or three coming up in the next couple of weeks.
Mark tends to sleep during his chemo days at the hospital. A new medication he is being given this time seems to be making a world of difference. He is still barely eating, instead still getting fed through the NG tube, but nonetheless is reporting barely any nausea and no pain. He was awake today for about 16 hours save for a single short power nap. His mood is very good, and he still makes the nurses laugh.
With school starting up, it was necessary for me to switch out with Wendi on Wednesday night and be the bedside parent, and we have watched movies, as well as some Dr. Who and MST3K, played some 5-card stud, he's worked on logic puzzles, and we have just enjoyed some nice chats.
One sign of too much hospital time was that when I arrived at the hospital Wednesday night, my first time back in about a month, the girl at the security desk spotted me while dealing with other people. While still talking to them, she looked up Mark's room and had my security badge ready before they left. She held it out to me as I approached, before I could say anything. I hadn't even known what room he was in until then. Hope the hospital knows she's a keeper.
All signs point to going home tomorrow, and then hunkering back down into his at-home medication regimen, and hoping the side effects remain manageable. The feel-good moments of an uneventful hospital stay will most likely give way to issues while back home, so please keep Mark in your prayers. Thanks for reading.
Tuesday, August 25, 2015
Thursday, August 20, 2015
Mark has been doing so much better this time around after Round 3. Round 2 was a wretched time, he was essentially in the hospital as much during that following recovery period as out. The low point for Round 3 was just nosebleeds and anaphylactic reactions to blood platelets. The reactions were dicey, to be sure, but still a cakewalk compared to all the complications from Round 2.
He still isn't eating enough, so he continues to get nutrition through his NG tube as much as his nausea will allow. But he is frequently up, he is chatty, he is witty, and his moments of grumpiness fewer. He has found the energy to rock out to Lego Rock Band most nights lately, which we are counting towards his at-home physical therapy.
Fingers crossed for, if not good news, at least no bad news, from the MRI. I don't know how well we could stand a hit to our morale right now.
So, after labs were drawn, the oncologist came into the room and partly closed the door. I think we looked calm on the outside, but my heart was in my throat. This is what we got (click it to see a larger version):
In much fewer words: The post-surgical cyst that formed after the big procedure last winter has notably diminished in size. Nothing else of significance was visible on the scan.
......Nothing else of significance was visible on the scan!
Now, to keep perspective and expectations grounded in reality, this does not mean he is cancer-free. At a purely technical level it simply means that his tumor is no longer visible to an MRI scan. It does not mean the cancer is gone, and there are no guarantees that he is or will be cured.
But, for sure, this is the most hopeful we have allowed ourselves to feel for a while. This is, after the course of treatments Mark has gone through, the best-case scenario to hope for at this point and time.
From the deepest wells of our hearts, our family thanks you all so much for your continued prayers and words of encouragement. Mark is not out of the woods yet by any stretch, these next three rounds of chemo will be very hard on him, as there is a little less recovery from each one before the next, but for the first time in a long while we have found reason to have some guarded but real hope. We hope you will continue to hold him up and pray for his spirit, to help him keep up his reMarkable Courage. God bless.
Monday, August 10, 2015
The short version:
Mark's third round of chemo went remarkably better. We went home as scheduled on July 31st and had no emergencies between then and his follow up the next Tuesday. On Tuesday his platelets were low, so they have him a transfusion, which he had an allergic reaction to, gives and difficulty breathing. The good thing is his oxygen saturation stayed good. They couldn't finish the transfusion and required benadryl and a double dose of steroids to get it under control, but we were able to go home that evening.
Wednesday night at 11pm he got a nose bleed. When it hadn't stopped after 10 min we called oncology. They said to take him to the ER, so off we went. It ended up lasting over an hour, but his platelet count came back "ok" (low, but not awful), so we went home.
Thursday was quiet and Mark had a good day. That evening he began to get really tired and uncomfortable, complaining of headaches. The next morning we had an appointment early, so we just have him some meds and headed to sleep.
Friday morning he woke up very tired. He took his medicines and we jumped in the car, where he began to complain of stomach pain and extreme nausea. I knew the best thing would be to get him to the clinic asap. He began throwing I'll as we pulled out of the driveway, and then his nose began to bleed. When we got to the clinic, He was still bleeding, so I went back and asked if They could see us early (it was only 8:40 am). They figured he would need blood so they immediately put us on the day treatment side of the floor. His labs came back low for everything, which meant he'd need two different transfusions. He was also complaining of pain all along his GI track and he was starting to run a low grade fever that kept creeping higher.
They decided to admit him. Then his port stopped working, so it took about an hour to get that cleared up. Finally got his platelets, pretreated with benadryl, and only a few hives.
Moved upstairs, got red blood pretty late. Overnight his fever climbed to 103 which got us a weekend stay.
Saturday he needed red blood cells, and his stomach and throat still hurt but otherwise he felt better.
Sunday he got platelets again, this time he had a few more hives than Friday even with the benadryl pretreat.
Everything was on track to go home this morning. No fevers, all his bacteria cultures came back negative, no more vomiting. The only issue was his platelets were still a bit low and he'd had another bloody nose over night. Instead of having us leave and have to head back of he got another bloody nose at home, they decided to give platelets and then we could head home. He'd had benadryl a couple hours before, so they started the platelets and I got started packing. Everything packed up, I settled down to get some work done before we left. And then Mark coughed. And coughed again. "Mom, what are they giving me right now?" "Platelets" "Well, my throat feels scratchy and my eyes feel like they're swelling."
I looked up. His eyes were swollen so much they had wrinkles underneath them. Red blotches we're starting to spread over his body. I called the nurse and let her know. Nurses swooped down upon us. They gave him benadryl again. He kept getting worse. They gave him steroids. The doctor showed up. He kept getting worse. His oxygen was dropping. Another dose of steroids. The doctor and a nurse were constantly checking his breathing sounds. His oxygen levels kept going down. The nurse kept looking at his vitals then looking at the doctor, over and over, like she was just waiting. Finally she left the room. She came back and said she had an epi pen waiting and had called the respiratory therapy people from the picu. His whole body was covered with swollen red patches. More people came in. Finally the order was given to give him an epi pen.
His oxygen started to go up. Everyone began to relax. Of course, an epi pen means several hours of observation. So, here we are, trying to be uninteresting (his toes did begin to turn blue about half an hour after the shot, but they had us elevate them and they pinked up again). I've ordered lunch. They're planning to have us out of here by 7pm now. We're heading home with two new meds. Out next appointment is Thursday. Here's hoping for a couple of boring days at home :).
Hugs to you all!
Thursday, July 30, 2015
Mark hated his ng tube when he got it last week, but he has gotten used to it. They gave him a weighted one so that it is harder to throw up and the tubing is thinner. We spent the next several days working him up slowly from 5 ml per hour of feeds (1 tsp!) to 45 ml by Tuesday morning when we were admitted. He did great that first night, but we did have to drop his feeds down to 25 ml per hour to help with nausea. Yesterday we dropped it again to 10 ml, which is where it is sitting now.
This morning I met another mom whose son has brain cancer - choroid plexus carcinoma. He turns three next week. We are Facebook friends now. His name is Henry - please pray for them!
Mark has been pretty miserable today, but he's not able to tell us what's wrong. Not sure what to do about that. He's been struggling with acid reflux and hiccoughs. They put him on a med for the acid reflux. The hiccoughs are a side effect of one of the new anti-nausea meds they put him on. They're driving him a bit crazy. His potassium has been super low, so they are suplementing that. Nothing so far, though, that should make us have to stay past tomorrow :). Thanks and hugs to you all!
Tuesday, July 21, 2015
Saturday, July 18, 2015
Wednesday, July 15, 2015
Got to go. Hugs!
Monday, July 13, 2015
Today all of my family (that live with me) came to visit! Frank stayed with Mark (which they needed) and I got to go with the children out and about (which we all needed). It was so nice to spend time with them. It has lightened the load and brightened my spirit. I am feeling much better.
Mark has been nauseated again today, throwing up this afternoon. He also spiked a fever again this morning. The last blood culture came back negative (meaning the fever was not from a blood infection), but they had to do another one with the new fever. We currently don't have a target day for leaving. Sigh. But right now he is sleeping soundly finally (they wanted him to stop the morphine so we hadn't been doing pain meds today, but Mark finally admitted he needed them and so he is more comfortable again).
He also had to have another red blood cell transfusion. They're expecting him to need platelets again tomorrow because they are dropping as well (that will be his fourth platelet transfusion this round).
I'm feeling like a broken record. The doctors suggested maybe we should start weaning him off the iv meds again. I said I feel like we are exactly where we were last Monday, except now he feels worse and has a fever. They didn't push it.
One good thing, though, is his WBC was up to .2 this morning. It's been under .1 for a week, so the slight upward trend is encouraging. I think right now they're just hoping he starts to feel better as they climb.
Sunday, July 12, 2015
On the downside, he's begin hallucinating, which he hasn't done at length since after his brain surgery. We weren't sure what was causing it then either. There are a number of variables with all of the meds he's on. Last night we had to put the bed alarm because he tried to get out of bed a couple of times while he was disoriented - one of the times he kept "yelling" happy birthday as he struggled to get up.
The Dr got to see it today. I woke Mark up while he was in the room. Mark looked at me and at first didn't really see me, then he focused on me and startled, looking very alarmed. He reached out and touched my face and asked me what was wrong and why I had turned blue. I told him it was ok, I'd turn back to my normal color later and he could just go back to sleep and not worry, which is exactly what he did. Its strange because he's aware of what is going on but he sees other things in addition to share really here and he mixes things up. It's hard to explain. He told Frank yesterday he kept thinking the IV pole was Joseph.
Between that and his headaches they're considering doing an mri this week. We'll continue to keep you updated. If nothing else, it's definitely keeping things interesting. Hugs to you all and happy Sunday! God is good, all the time :).
Saturday, July 11, 2015
Frank came to relieve me tonight. I packed up all of my stuff, briefed him on all the "important"things he needed to know, and made it as far as the door of the room before I completely broke down crying. Other than the 2 nights I was sick after his second surgery I have been with Mark for every appt, hospital stay, etc, and I wasn't ready emotionally to let go of that. I'm not sure about all of the psychological reasons, but I just couldn't do it. My sweet husband held me while I cried, called home to explain the situation (because I couldn't bear to hear disappointment in my other children's voices), and went home to look after everyone.
I feel like it's a control thing - there is really nothing we can control about what is happening to our child, but I can do this one set of things: I can sit by him, argue for him, help him, hold the vomit bag for him. I can wipe his face when he's sick and lean in close to hear his words that are barely a whisper at this point because of the pain in his throat. These are the things I can do for him, and I wasn't ready to let that go tonight.
Friday, July 10, 2015
Mark has been not as nauseated, but much weaker and more fatigued. Not able to do PT or watch a movie. He didn't even attempt to eat anything today. Pretty sure that ship has sailed for now.
Thursday, July 9, 2015
I am busy typing an email and have to stop to figure out what he is talking about. A song is playing and it takes me a second to place it. "What?" I ask.
As Mark is falling asleep, we are listening to his favorite Pandora channel, based on the Newsboys. The song is "Give me your eyes" by Brandon Heath. (I am putting a link at the bottom so you can listen to the song if you have never heard it.)
"He's right," he repeats. "When we see people on the street or at the store, we treat them like NPC's."
(NPC = Non-Player Character, like the random background people in a video game that are of little importance and generally ignored)
"You're right. What could we do about that?"
"Wave at them. Smile."
So that is Mark's challenge to each of you tonight. I told him I was putting this on the blog and he smiled. He wants you all to go out tomorrow and work hard to not treat others like NPCs. Smile. Wave. Make people wonder what you're up to. Do it for Mark, because you never know what that person is going through. God bless you all! Good night.
The team came in a bit after that, hoping he'd be able to go home. He was just exhausted and moaning, and when they asked him if he wanted to go home, he said no, he wanted to feel better first. Back to the hall again. The doctor said (nicely) if he was going to bee miserable here, he might as well be miserable at home, that maybe going home would help. I agreed, but as we talked it seemed that the nausea had come back when we switched him off the IV meds back to oral. I explained that I had no wish to just stay in the hospital indefinitely, but if we could make him comfortable in the hospital by giving him IV meds, I would prefer that to taking him home and letting him be miserable.
We decided to use today to try a new anti nausea med and to put one of the other meds back on IV, then discuss going home again tomorrow.
After that he developed some severe pain in his legs. Once the antinausea med was switched back to IV and he had an Oxy, he began to feel better. We had a nice visit with Gen and Chi who had brought Nick, Bella, and Joe with them. He had a great PT appointment, and then he developed another headache which he rated at a 3 (which is high for him). Now he's resting again, and another Oxy is helping the headache go away. We'll see how he does over night. Maybe we'll head home tomorrow.
Hugs to you all.
Wednesday, July 8, 2015
His hemoglobin fell, so he'll have a transfusion for that either tonight or tomorrow morning. Otherwise he's been ok. Yesterday he was up until around 4pm, even making it to the chair to play a couple of hands of cards, then he got tired and slept. His legs started bothering him again around 9 and he was having trouble getting back to sleep. A melatonin did the trick finally, but in the meantime he was pretty miserable.
Right now we're watching Planes. He was playing Wii a little bit ago. His energy level is still low. We're so thankful for the tpn, though, because he still hasn't been able to eat anything.
The man who brings room service just left. He knows Mark and I both by name at this point, as does the housekeeper. He said see you tomorrow as he left. And so he shall.
Tuesday, July 7, 2015
Yesterday he was experiencing a tickling sensation in his bones which was causing him a lot of distress. It was decided that this is probably a sign of spreading neuropathy from the vincristine (one of his chemo drugs) he is getting (it happened last week when he received vincristine as well). They said it is causing his neurons to misfire and confusing the signals. This is also the reason he is hypersensitive to touch and pressure.
Today PT brought him a walker and taught him how to use it. We will be receiving one to take home from the hospital because he is still having significant issues with balance. Even with the walker, someone has to be with him at all times when he's walking because he is "tippy".
Last night I finally took time to look at our pre-cancer family pictures taken by our friends Emma and Will. It was so bittersweet and I had a hard time getting to sleep after. Praying to see him back to his cheery self someday.
Hugs to you all!
Monday, July 6, 2015
Mark had a great morning after the food thing was settled, but around lunch he became nauseated again. He battled it all afternoon until finally vomiting a little while ago. Still not eating anything, but they started TPN this afternoon so we know he's getting nutrition. Goodnight everyone!
So now for the update. This will be the last time I copy from facebook (at least for awhile). If you've already read the facebook posts, please scroll down to the dotted line for today's update.
July 3, 2:13pm
This is an important song that really touched my heart. Our pain is real, and that's ok. God has got this. He's big enough to handle our cries. This is for all my friends and family walking hard roads right now.
P.S. If posting, please sign your first and last name so we can keep everyone straight :).
Tuesday, June 30, 2015
Wednesday, June 3, 2015
What was he thinking? Where had his mind gone?
Had it followed mine, thinking first about how I wish he was able to do all the things they were telling us about - archery, rock wall climbing, horseback riding. He is almost scared to leave the house most days, and as we've been in the hospital his walking has deteriorated. Then wondering about making plans for next year. Will we get there? I have faith and am hopeful, but it's hard to keep the thoughts away.
Or was he simply overwhelmed by how tired he is, how hard it is to do basic things - get dressed, walk around the unit, squeeze putty.
Maybe he was reflecting on how we're almost done and soon we'll be heading home. True he loves home, but it's also hard to be there, having to share us with everyone, having to deal with excitable energetic siblings.
Or perhaps he was just worried about the chemo. We've gotten through the first two days with relatively few side effects. Was he worried he might not make it through tonight so easily?
I don't know. He wouldn't tell me. I'm not sure he knew.
So we held him and wiped his tears and told him it is alright to not be strong sometimes and that we are proud of him no matter what and it's fine to cry. And eventually he calmed down.
Now we're watching Captain America. He's starting to enter his "happy time" of the day. I can tell by the amount of commentary coming from his bed. It will continue to increase until it's hard to hear the movie through it. And then he will suddenly get tired again and fall asleep.
A new rhythm, a new normal.
And maybe that is what the tears were for.
Tuesday, June 2, 2015
Monday, June 1, 2015
Thursday, May 28, 2015
|You can see the Tillamook Rock Lighthouse way off behind Mark.|
We are just a few days out from Mark starting up his six months of maintenance chemo, which will make this a fairly long Summer for him with ups and downs, but at the moment his spirits are pretty great. It was a good day.
Sunday, May 24, 2015
We've been getting notes from friends and strangers alike via Facebook and email and the blog for months now, which has been lovely and uplifting, but this is the first time anyone in the treatment process took the time to do something like this. I mean, pretty much all of the healthcare people we've dealt with have been terrific, but sending us this card was especially sweet of them to do.
We just thought we'd reach out and let you know that you are in our prayers. We hope everyone is getting back into their normal routine.
We miss you all. It was such a pleasure to get to know your family.
Thanks for always doing your best to show up on time, and being patient with us if we were not on schedule. Wendy, you are indeed SuperMom! We were impressed with how you stayed on top of everything. Oh wait, is it Wendi? ☺ Wendi + Frank, you are AMAZING parents. Mark is the bravest little guy we know. Bella is a sweetheart. We all miss her hugs. May God continue to bless you all,
♡ Gantry 1 "Beam Team"