Squeeee, it’s 2015! You know what the means right? Andy finishes chemo THIS YEAR!!! While I should resolve to write on Andy’s blog more often, I don’t do New Year’s resolutions. I find them silly and a great way to set one’s self up for failure. While updates have been few and far between lately, our life has honestly been pretty “normal”. I rather like it that way and figure not many people are too interested in our day-to-day life. I suppose if I made entries more often, then each time wouldn’t be the length of a novel. Maybe I’ll work on that. Since I last wrote, Andy’s had three appointments. All were uneventful and we’re thankful to be that much closer to the end.
Off came the braces on October 14th and Andy couldn’t be happier! Fingers crossed the rest come in straight.
His appointment on October 28, was another spinal tap of Methotrexate – only three more of those left now! He did wonderful as usual, but it still doesn’t change the fact that is makes mom and dad a little uneasy that he is sedated. Thankfully he has an excellent care team and he seems to tolerate the procedure well. His labs looked good at this appointment with his ANC being 770 and his weight 81 lbs. His hemoglobin was a little low at 8.9 – normal is 11-14, but nothing they didn’t expect his body to be able to recover on its own. Besides the spinal tap, he also got the usual Vincristine in his port.
A gorgeous fall day at the pumpkin patch.
His second appointment was on November 25. This one was a quicker appointment since he just got the Vincristine in his port. Again, his labs looked pretty good with his ANC being 1390 and his weight at 83 lbs. Unfortunately his hemoglobin had dropped a bit more to 8.4, so we were on the cusp on him possibly needing some blood if his body didn’t recover on his own. The doctors typically transfusion between 7 – 8 and told us just to be mindful of signs he was needing blood. Things like pale lips and gum, rapid heart rate, dizziness, headaches, sleepiness, etc.
Love those boys!
On the evening of Saturday, December 5, we knew it was time to take Andy to the hospital for some blood. He’d been very sleepy, just overall lacked energy, and was looking a bit pale, especially his gums. We phoned the on-call oncologist and she said she trusted our judgment and if we thought he needed to come in, she’d call the ER to let them know we were coming. It’s a perk of being an oncology kid – you have a “fast pass” in the ER (well at least to get you a bed, beyond that it can be painfully slow unless you have a fever). After being there nearly two hours, we finally got the news that his hemoglobin was 6.6 – extremely low and he would need a transfusion. Since it was already nearly 10pm, the oncologist just wanted him to stay the night and she would check him in the morning. Also worth noting, he had thrown up a few times that night. The ER doctor said it could be from the low hemoglobin and honestly I wasn’t too worried because he can randomly throw up and I always just chalk it up to part of the chemo. Thankfully it’s not too often we have to deal with barfies anymore.
A little pumpkin carving action.
Once we got settled into his room on the 4th floor, the very same room we spent 10 nights in at the beginning of treatment, the blood arrived. However upon taking his vitals before starting the blood, he was running a fever. Halt the blood, first a blood culture must be drawn and IV antibiotics given. Finally about 2am, the blood was started, which had to run over four hours because he was so anemic. We were hopeful of getting out in the morning since that was what we were told, but Andy continued to have a fever all day and had some other potty problems, so the doctor wanted to keep us until they could give him another dose of IV antibiotics at 6pm. His ANC was 1070 when they checked it in the ER the night before, but 12 hours later, it was down to 760 (clearly fighting a bug) and his hemoglobin was only up to 7.3, so the doctor ordered another unit of blood for him. He slept most of the day away and true to her word, the oncologist let us go home that night after the antibiotics.
Starting to pink up a little bit. Poor sweetie pie.
The three of us were all so ready to go home. What we thought would be a few hours stay, turned out to be nearly 30 hours. We had a sweet, new nurse for night shift both nights. Unfortunately when she went to deaccess his port so we could go home, she forgot to put the heparin in it so it wouldn’t clot off. She came running after us as she didn’t realize this until we were actually getting on the elevator to go to the parking garage. She was so apologetic about it and we felt bad for her. Well this oversight took nearly two hours to remedy because she had trouble reaccessing him, had to call the IV team to come reaccess him (two extra pokes for poor Andy) and by the time the port was accessed properly, it was already clotted off. So the nurse had to order some declotting medicine from the pharmacy, which must sit 30 minutes. Thankfully one dose did the trick and at nearly 11pm we pulled away from the parking garage to head home.
So thankful for this donor and the blood they gave to help my son.
The story really should end that we all had a wonderful night sleep at home and while we did, things took a turn for the worse as every single member of our household got Andy’s stomach bug. Thank-you-very-much-Andy! So while he did have terribly low hemoglobin and needed a double transfusion, he also was battling a tummy bug that he decided to share with the rest of us. I’ll be honest, it was pretty brutal, however it was short lived and for that I’m thankful. It’s a good reminder to douse ourselves in hand sanitizer when we’re out and about, especially this time of year when the crowds are thick and germs are at their peek, and continue good soap-and-water hand washing at home.
Thanks for the sign Brenda & Mike!
Andy’s latest hospital visits was December 23. It was to be a quick pit-stop visit with just labs and Vincristine in his port, however the afternoon before, December 22, he decided to run another fever. Of course it was too close to the clinic closing, so off to the ER it was again. This time we packed our bags because we didn’t do that last time and poor daddy had to run home at 10pm to get all our things for overnight. Thankfully this time the visit was quick. A fever does that for you because they have to be administering IV antibiotics within 30 minutes of arrival. And the stars aligned because his ANC was high enough that he needn’t be admitted! It was 1060, however his hemoglobin was still a bit low at 8.2 and his platelets were down to 50 (normal is 140-440). On the bright side, Clem the Clown gave us a personal magic show in Andy’s ER room.
No tears here, just lots of laughs with Clem the Clown.
So the next morning, it’s “hi ho, hi ho, off to Randall we go” for chemo. Thankfully the fever had subsided by the time of his appointment and it was a pretty quick and uneventful visit. Since his labs had just been done about 18 hours before, things were still basically the same, tho his hemoglobin came up a smidge to 8.7 and his platelets to 61 – ANC was still at 1060 and he weighed 82 lbs. Because his doctor wanted to be proactive and not have us have to return to the ER that night for more IV antibiotics, he suggested we might give him another dose even tho he wasn’t running a fever. As much as we don’t really relish giving him any unnecessary medicine, we really didn’t want to have to come back that night if he decided to spike another fever, so we opted for the medicine. That night we were thanking our lucky stars because the fever returned. Thankfully it passed by morning and we didn’t have any future ER or clinic visits. However, Andy did get another tummy bug right after Christmas that was pretty rotten and was suspect of being c. diff, but before we could take a “sample” to the lab on Monday, he got better and seems to finally be himself after a pretty iffy month of feeling in the toilet a lot of the time. He’s taken lots of naps as of late, but apparently he’s just been fighting off little sickies; tis the season! He’s finally been eating better over the past few days too and hasn’t had a nap in several days. I think we’re turning a corner.
Andy with Clem the Clown in the ER
And just so I don’t forget, he’s continuing on the same medicine dosing as he has been since summer with 25 mg of Prednisone twice daily for the first five days of each cycle, then he takes 2 ½ tabs four days per week and 2 tabs three days per week of 6MP, 10 tabs of Methotrexate on Tuesdays, and then his Septra antibiotic twice daily each Friday, Saturday, and Sunday. He’s still taking 125% of the ideal dosing, but that is just what his body tolerates best to keep him in the window of 750-1500 ANC.
Are those Christmas jammies? Why yes, they’re Christmas jammies!
We had a lovely Christmas celebration, very low-key with family. Andy wasn’t feeling tops that day, so he napped off and on at Auntie’s house while the rest of us played a game of charades and visited.
Thanks Uncle Mike & Aunt Kelly!
Only seven more hospital chemo appointments left; we can almost count down on one hand! Recently I’ve had a few different people seem surprised we’re “still doing this”, but kindly reminded them that blood cancer is something that is a very lengthy process. There is no solid tumor to attack and remove. It’s cancer throughout the entire body since blood is everywhere.
Andy loves his signs. :-)
We always appreciate prayers for Andy when he comes to your mind. We’re hopeful that we had our last overnighter at the hospital. Even tho it’s been two years since we had to stay overnight, it was an unwelcome reminder of how unpleasant it is. There is truly no place like home. So excited to usher in 2015 and get the last of Andy’s chemo treatments behind us.
“The Lord is my shepherd, I shall not want.” ~ Psalm 23:1