Hello everyone! Today is my birthday! Thank you for the birthday cards, wishes, prezzies, etc. Tom seems to be having a good day so far. Yesterday was a bit of a doozie. Nothing bad happened, just sort of a large inconvenience really.
We went in for Tom’s standard lab draw and Tom mentioned to the nurse there that he was still having the excruciating headaches from the intrathecal chemo on Wednesday. He simply let her know that the pain meds he has work for things like an aching back or slight headache, but they do not help the intrathecal headaches and he just wanted something that would. The infusion clinic called the on-call oncologist (our oncologist is out having surgery during the duration that tom is out of the hospital and will be back when we go back in). The on-call oncologist said to send tom to the emergency room to get another blood patch to seal the spinal fluid from leaking and causing the headaches. The ER would be the quickest way for him to get one of these. What this doctor failed to do was check Tom’s labs as they would have indicated that Tom not only had nowhere near the platelets necessary to not put him at risk for bleeding, but his white blood cell count is back down to .1 which means the last place Tom should be sitting is in an ER full of sick people and potential contaminates.
Nonetheless, the doctor at the front counter saw the risk and understood Tom’s position and got us almost immediately back into a room so Tom could lay down and relieve some of the pain and also be out of the way of infection. This emergency room was packed! Some had mentioned that they had been waiting for six hours!!!! So we are very thankful for this doctor who saw us through. While in there they gave Tom some dilaudid for the headache and after getting his labs back that we’d originally been at the infusion center for, they also topped him up with some platelets (they were down to 19,000 and you need at least 100,000 to do the blood patch mentioned) and his hemoglobin (red cells) were down to 8.2 so they gave him two bags (Tom’s transfusion parameters call for blood once below 8.5 so he wasn’t too bad). Just getting some blood helped a little bit as well. He also got a bonus dose of dilaudid before leaving!
Today we started off with me making some delicious pancakes! Oliver arrived just before 8am, David got in last night as well. May go mattress shopping to find something that can alleviate the back pain Tom has (our mattress literally has very obvious indentations from where we each sleep) and hopefully make some of the headaches subside and his times in bed much more relaxing so that he can heal faster and be in comfort. Hoping that labor day brings us some good deals!
We hope everyone has the opportunity to enjoy the Holiday weekend!!!
Tom and Laura
Tom is unexpectedly back in the hospital. He had an extremely rough day yesterday (9/2) and in the afternoon he had a fever of 102.3 which prompted us to call the hospital. We were received quite promptly into the ER where they drew some blood, contacted the on-call oncologist and arranged for him to be admitted.
Tom's levels for blood were even lower than they were when he went in to the ER on Friday and was given blood. However after a week of chemo it is expected for counts to crash quite low before beginning to reproduce again. His hemoglobin was at 7.4 though so he required some more blood and platelets. They gave him platelets and two units of blood last night.
His fever was up and down last night from 99.6-103 and it's crept back up from 99 to 101 again this afternoon. Poor Tom was very ill last night and in a lot of pain. His blood levels didn't come up quite enough with the two units so they gave another bag of platelets and two more units of blood today. Needless to say, he is very tired today.
Due to the fever meaning infection of some sort, he is on antibiotics and antifungals, etc. On the larger bright side, though they haven't 100% cured his pain, they sure do have a heck of a lot stronger stuff in here than we are allowed at home!
Now we just need this fever to leave us alone so his counts can rise and we can get him a blood patch to make his head stop hurting!
Aside from this bump in the road, I had a nice birthday Saturday... At least we were granted one alright day the last few. :). David has left back to Canada and Helen will be with us next week for five days.
Thank you to Bo and Jamie whom though I missed them, evidence of their stop was left behind with some car magazines for Tom and a bday card for me :)
We hope everyone has enjoyed their labor day weekend!
Until next time,
Laura and Tom
Let me start with a large sigh (of relief at this point). I am so sorry to keep everyone waiting all week, luckily I think we had for the most part a good phone tree going. Where to start, perhaps where we left off on Monday? So let us go to Tuesday.
Tuesday we had a rejoiceful morning as Tom’s fever was officially gone. Though he was still in quite a lot of discomfort (to say the least) at least the antibiotics had started to make a dent. I went home to have some breakfast, some coffee and make my skype calls. Upon parking back at the hospital, Tom called and said, “I’m going for a brain scan and I’m getting transferred to ICU.” I of course respond with, “When?! What the heck happened in two hours?!” Tom says, “Now and I don’t know.”
Of course there is an event happening of some sort and the only parking space is on the top story and I have several bags of stuff to carry in so I quickly park and throw all of my stuff on and run like a homeless person in a thunderstorm. I get inside and Tom tells me to set my stuff down so I’m not standing there “looking like a gypo” so I suppose we both had the same idea of what I looked like. They wheel him on down for the brain scan and once that’s done there is no nurse around and they just park him in xray until someone comes to get him. An ICU nurse appears after about ten minutes and is rather upset that he was left alone, his ICU room is not ready quite yet so he takes us back to Tom’s oncology room and we wait there while a battle of the nurses takes place as to who was responsible for staying with him during the scan.
Eventually we ended up in the ICU. While at first we weren’t 100% sure what got him there, after speaking with one of the oncology nurses, she explained that there was no single event that prompted the decision. Tom’s headaches had not subsided, he had a nosebleed while I was gone, his blood counts hadn’t responded in the way they’d like to see after multiple blood transfusions and they still weren’t sure what was causing the infection he clearly was battling. All of this combined, they felt the one-on-one supervision would be best until they knew what was going on.
Once in the ICU they got him started on some platelets and some blood. As soon as lunch hour was over, I went to the oncologist’s office to find out what was going on. Apparently our oncologist’s medical assistant was still on her lunch so after the receptionist said, “Oh he’s not back in the hospital is he?” and my response was, “He’s actually in the ICU!!” she said, “Oh, well what’s your number and I’ll have her call you as soon as she gets back.” I told her that I also just wanted to impart the events of the last few days and I said that poor Tom was worried sick, he thinks he’s on his deathbed and we need some answers. No one called me. At 4:20ish I called, afraid they would soon be closing office, and the person who answered tells me, “Well Dr. Colbourn is out until the 10th.” (In a very harumph sort of manner) and I responded in matching tone, “well my husband is supposed to home right now and he is in the ICU instead. Dr. Colbourn made it very clear that he would be available should anything go awry. I think that this may constitute that.” She then worriedly responded with, “Oh well let me call him and I’ll call you back.”
Within fifteen minutes, Dr. Colbourn’s partner was down in the ICU giving Tom all of the results that the phone lady had told me were not in yet. Winning! Especially given that his scans came back ALL CLEAR! Needless to say, Tom is a super-star and his ICU stay was a short six hours. That, ladies and gentlemen, was our Tuesday.
Wednesday, nothing had really changed minus that they were able to figure out that the “serious bacterial infection” was E.Coli. No wonder he felt so incredibly terrible. Knowing precisely what it was they were able to take him off the large amounts of general antibiotics and get him on the specific antibiotic needed. Literally by the next day (so yesterday) Tom was feeling so much better. His inflammation went down (which they said it would once they could treat the infection) and his body started to feel so much better.
Yesterday he was up moving around, doing laps in the ward to re-open his lungs a bit and get moving. He was starting to eat again. A total 180. His blood counts have really risen as well! On their own, even! His white blood cell counts were at 1.9 yesterday, his neutrophils were at 63% which Dr. Gowda said is really good. He was told that once the counts begin to rise they really take off and that we will be likely to go home today (Friday).
Tom is currently up and listening to some music. He is doing much better and feels comfortable going home so that’s definitely really good. Whether or not Tom will still be returning for his scheduled chemo on Tuesday, we are not sure. Apologies for how incredibly long this email is, but it has been one incredibly long week.
So, there you have it. We are hoping to go home today but it will probably be more evening time as we are sure Dr. Gowda will want to see him first and he is getting Tom a little top up on blood this morning. Hope everyone is keeping well!
The news for this week is that Tom was given a full reign on whatever he'd like to do. We've gone out to eat, he got his favorite (Togo's #8). He's been out and about, building a new fish tank venture. All due to having this extra week which allowed his blood levels to accumulate to that of a normal person's levels. It's too bad such clearance wasn't received Monday, but we'll take it! Helen unfortunately leaves again tomorrow morning. Tom goes back into the hospital Monday to start round 2A so we have a weekend left to live it up. He is also due for another bone marrow sample to check it's functioning levels and he will most likely also get his PICC line replaced upon re-admittance as well (he is not very stoked about either of these two things).
Luckily this is very short (that's a good thing for everyone, haha) due to Tom feeling so sprite. Hope everyone is doing well!
Hello everyone! Apparently my email has booted folks off of the list again, so I apologize for anyone being left out of the loop. I think I've solved the issue, so hopefully it's good to go now. Tom is in for this second "odd" round so for sense of ease we shall call it 2a. Today was the first day he had any kind of "chemo" drug, but he had some pre-meds and rituxan yesterday. He will be doing a lot of chemo over the next few days, tomorrow he has the intrathecal and on friday he is scheduled for another bone marrow aspiration to check to see that his marrow is functioning normally now. As imaginable, Tom isn't too stoked about either of these things.
Tom says he is bored, doesn't want to be in the hospital and is not looking forward to chemo tomorrow. That's what he has to offer toward his update. At least he is feeling good enough to be bored. He also adds that little things are making him mad today, he managed to injure himself while walking today (just took some skin off of his toe, nothing too major), he says knowing his luck he'll end up having to have his toe taken off. Enough from Sunshine.
That said, it's time I entertain him. Signing off for now,
Laura and Tom
Tom's week of chemo has been not so hectic as those in the past. They have lowered the dosage of chemo drugs, due to him having contracted e.coli after his last round and not wanting anything like that to re-occur. He is starting to feel the effects more now, he spent yesterday battling hiccups (which sound like no bother, but after a couple of hours they certainly make a person hurt a bit). A strange side-effect, but one nonetheless. A random fun fact, one of the chemo drugs apparently gets rid of keloid scarring, as one of Tom's keloid scars has disappeared! Yesterday Tom had to have his PICC line replaced, but it went much smoother than the initial installment, which was quite the relief for Tom. The nurses told him that his meds made him quite the chatterbox.
Currently, Tom is down having a bone marrow aspiration. Dr. Colbourn said he is at the point in treatment where they need to just take a small sample to just check that the chemo is doing it's job and that his marrow is beginning to function properly again. (cross our fingers). He is on his last bag of chemo for this week, but it's the awful 24 hour Adriamycin. This one tends to be the one that sort of knocks him down afterward. With Tom's counts having been so healthy upon admission, his counts as of yesterday were still in a good range (especially for him), so we expect that his "crash" will be while he is at home this upcoming week doing chemo through the outpatient center. It's been nice though as he hasn't been neutropenic while in the hospital, so he has been allowed to still eat whatever he wishes, which has made the stay a little more pleasant.
It looks as though his return home will be Sunday. Tom says he can't wait to be home and in his bed, poor guy. Through the course of this stay though he has been up and around, doing laps around the ward to get some movement and exercise... he even commandeered a wheelchair to "work out his arms" though I have a sneaking suspicion that was just an excuse to play with a wheelchair.
I will bid you all farewell for now, hope that you all are well and have a wonderful weekend!!!
You know what they say, "No news is good news!"
It's been a long gap between emails, but for good reason- Tom kept it very "boring", hooray! We had no infections, no surprise ER visits or hospital stays, it all went according to plan. Today is re-admittance day and we are luckily scheduled to go in at 1 pm (which means Tom can accompany us in dropping David off at the airport). If everything goes according to plan this week, Tom will be home again on the weekend and be finishing out this round at home next week.
This round of chemo should also have the last two intrathecal chemo sessions!!! Tom is rather stoked about that, no more spinal taps! A bit of a light at the end of the tunnel there! We had a wonderful time off and this weekend we hosted Tom's brothers and his dad which was great fun! We also got to visit with our niece, Lily which was a great joy, especially for Tom who hasn't really had a chance to see her since last December!
The Light The Night walk is just around the corner, October 27th. Looking forward to seeing those who can make it! This will perfectly land on the weekend just before Tom goes in again, so as long as no unforeseen bumps in the road happen, he will get to participate!
That's the news and updates for now, we will keep you all posted through his in-patient stay this week!