Last week Desmond had his 3-month off-treatment MRI and labwork done. He handled the MRI on Monday like a pro (really, he is now) and we met with the doctors on Thursday to get the results. I wasn't nervous because I feared bad news, but I felt sick to my stomach walking over to the Children's Specialty Center at St. Luke's to get the results...I remember taking that walk in February. It brought back a lot of bad memories.
Thankfully everything looks GREAT on Des' MRIs and bloodwork! There is no sign of active cancer cells. He has gained all of the weight back that he lost, and has even grown about 1.5 inches since this all started. The staff and the nurses were really glad to see him, and many commented on how good he looks with hair. I got some extra long hugs from the ones with whom we were closest.
We are off the hook through the holiday season, we'll have his six month checkup at the end of January.
11.04.2014
7.16.2014
Video of final chemo celebration
Desmond's last chemo appointment the other day wasn't scheduled until 2:15. That meant we got there at 2:15, and we waited until about 3:15 to actually get going on everything - getting vitals, meeting with the doctor, getting a bag of fluid in, and getting chemo going.
We didn't finish up until after 5:00, and it seemed like a lot of people had left for the day, but then a big parade of people came out to celebrate Desmond. They put on silly hats and necklaces, and had a big sign that said Last Day. They sang him a song about it being his last day, and they had presents. He looks pretty nonplussed in this video, but then they gave him an Iron Patriot toy and he rejoiced. I, of course, started crying as soon as they came out.
The woman in this video is Jen, a childlife specialist. Her job includes interacting with and playing with the kids and siblings in the waiting and treatment areas, and Des has really taken a liking to her.
We didn't finish up until after 5:00, and it seemed like a lot of people had left for the day, but then a big parade of people came out to celebrate Desmond. They put on silly hats and necklaces, and had a big sign that said Last Day. They sang him a song about it being his last day, and they had presents. He looks pretty nonplussed in this video, but then they gave him an Iron Patriot toy and he rejoiced. I, of course, started crying as soon as they came out.
The woman in this video is Jen, a childlife specialist. Her job includes interacting with and playing with the kids and siblings in the waiting and treatment areas, and Des has really taken a liking to her.
7.14.2014
Last day of chemo!
Today is our last day of chemo. We are all thrilled, to say the least. Even Regan cheered this morning when we said "Today's our last day of treatment!" I do wonder what she'll remember from this time...hopefully just that she always felt loved and cared for. She's really been lucky to have lots of one-on-one time with her aunts and her grandparents, and people have been so sweet to remember to send her cards and gifts when they've sent Desmond items as well. Both of the kids have also had some great one-on-one time with Jeremy - Regan gets to have "Daddy Dates" on the days that Desmond feels well enough to go to daycare, and Desmond obviously has had Jeremy's attentiveness while Regan has been at daycare or with family.
Desmond will be sick this week for at least a few days from this last treatment, but he should feel better in time for the bowl-a-thon this weekend.
Desmond will be sick this week for at least a few days from this last treatment, but he should feel better in time for the bowl-a-thon this weekend.
7.08.2014
Second-to-last chemo
Des had chemo this morning, his second-to-last one. His blood pressure was high, and the doctor thinks he is dehydrated, which would explain his cold-like symptoms off and on during the last week. He got a bag of saline fluid with his chemo today, and we'll focus on keeping him well hydrated and rested.
Last chemo is next week, and end-of-treatment scans on July 25, with a meeting with the doctor to discuss scan results on July 28. If all looks well, we'll get his port taken out in August sometime.
6.25.2014
On the Home Stretch
(This is copy and pasted from our fundraising page. I just haven't felt like updating my blog. As we start to wrap things up, my adrenaline is running out.)
I realize it has been almost a month since my last update. In that timeframe, Desmond has completed 25 days of radiation therapy. I am really relived that we decided to stay in Boise for the radiation treatments. The benefits of being in our own home, surrounded by our support system, can't be quantified, and I do feel like Desmond got the best possible care.
We celebrated Desmond's last day of radiation in a big way. I arranged for friends, family, nursing staff, and coworkers to come to the treatment center and form a tunnel for Des to run through while we cheered him on. Everybody was wearing their superhero gear and it was really emotional. I've added some pictures to this page of that event.
The nurses at MSTI and in the Pediatric Intensive Care Unit at the hospital (where he recovered everyday) had gifts for him and big signs. Many of them told me how much they enjoyed seeing his little face and big attitude every day, and how they will miss having superhero fights with him.
This week was week 19 of treatment. He will have vincristine (chemo drug that doesn't make him sick) on week 20, vincristine on week 21, and dactinomyacin (chemo drug that does make him sick) on week 22 (July 14), then we are all done. First non treatment scan will be on week 24 (July 25), with a followup meeting with the doctor on July 28 to discuss the scan results.
_________________________________________________________
On Saturday, July 19, at 7:0 pm, Westys Garden Lanes will be hosting a Bowl-A-Thon to raise funds for expenses incurred from his treatment. 2 games of bowling + shoe rental will cost $10.00, and there will be a raflle prizes and a silent auction. Save the date to join us!
If you have any prizes to donate or are willing to help in any capacity, please e-mail me at sara_baker23@hotmail.com. My mother-in-law is coordinating this fundraiser and she needs some help, it's going to be a big one!!
I realize it has been almost a month since my last update. In that timeframe, Desmond has completed 25 days of radiation therapy. I am really relived that we decided to stay in Boise for the radiation treatments. The benefits of being in our own home, surrounded by our support system, can't be quantified, and I do feel like Desmond got the best possible care.
We celebrated Desmond's last day of radiation in a big way. I arranged for friends, family, nursing staff, and coworkers to come to the treatment center and form a tunnel for Des to run through while we cheered him on. Everybody was wearing their superhero gear and it was really emotional. I've added some pictures to this page of that event.
The nurses at MSTI and in the Pediatric Intensive Care Unit at the hospital (where he recovered everyday) had gifts for him and big signs. Many of them told me how much they enjoyed seeing his little face and big attitude every day, and how they will miss having superhero fights with him.
This week was week 19 of treatment. He will have vincristine (chemo drug that doesn't make him sick) on week 20, vincristine on week 21, and dactinomyacin (chemo drug that does make him sick) on week 22 (July 14), then we are all done. First non treatment scan will be on week 24 (July 25), with a followup meeting with the doctor on July 28 to discuss the scan results.
_________________________________________________________
On Saturday, July 19, at 7:0 pm, Westys Garden Lanes will be hosting a Bowl-A-Thon to raise funds for expenses incurred from his treatment. 2 games of bowling + shoe rental will cost $10.00, and there will be a raflle prizes and a silent auction. Save the date to join us!
If you have any prizes to donate or are willing to help in any capacity, please e-mail me at sara_baker23@hotmail.com. My mother-in-law is coordinating this fundraiser and she needs some help, it's going to be a big one!!
5.22.2014
5.19.2014
The Storm Of Cancer
I found this in a comment on this blog - http://zenpsychiatry.com/loss/, I don't know who the author is. I do know I burst into immediate tears.
The Storm Of Cancer
Before cancer, you’re sailing along in generally fair weather. You’re travelling in one direction. You have maps, navigation aids and provisions. You might even be part of a flotilla – you and some other boats, sailing in the same direction at the same speed. Life is fine, good even.
Then a massive storm hits – cancer.
Your boat is seriously damaged. Maybe parts of it are lost or broken. Your maps and provisions are swept overboard. In the eye of the storm, you lose all sense of direction. Your main terror is that the boat will sink.
Then your cancer care team appear. They are your lifeboat; your rescuers. They attach ropes, patch your boat up and keep it afloat; they come alongside you, and take control of the steering and direction. Slowly, they tow you back to port. Sometimes this journey towards the port is even stormier than the catastrophe itself. But you know you are not alone – you have the lifeboat staff, you make a good team.
As the lifeboat tows your boat back to port you see friends and family on the shore waving and cheering. They are so relieved to have you back.
But then your boat just stops.
You are not quite back in port. You can see the lights, and your happy loved ones. But you’re moored just outside the mouth of the harbour. Then your lifeboat, and its team, goes. They drop the ropes into the water and sail away.
You might think: I can get back to port on my own. You’ve been there before, after all. And you can see it, right there, quite close. But it all feels different now. Your boat is still damaged. You need time for repairs. You need to get a new map and provisions. And you keep looking at the sky – is the storm coming back? You listen constantly, obsessively, to the weather forecast – you hear reports of hurricanes. They may be far away, but you can’t stop yourself from feeling that they are coming for you.
The Storm Of Cancer
Before cancer, you’re sailing along in generally fair weather. You’re travelling in one direction. You have maps, navigation aids and provisions. You might even be part of a flotilla – you and some other boats, sailing in the same direction at the same speed. Life is fine, good even.
Then a massive storm hits – cancer.
Your boat is seriously damaged. Maybe parts of it are lost or broken. Your maps and provisions are swept overboard. In the eye of the storm, you lose all sense of direction. Your main terror is that the boat will sink.
Then your cancer care team appear. They are your lifeboat; your rescuers. They attach ropes, patch your boat up and keep it afloat; they come alongside you, and take control of the steering and direction. Slowly, they tow you back to port. Sometimes this journey towards the port is even stormier than the catastrophe itself. But you know you are not alone – you have the lifeboat staff, you make a good team.
As the lifeboat tows your boat back to port you see friends and family on the shore waving and cheering. They are so relieved to have you back.
But then your boat just stops.
You are not quite back in port. You can see the lights, and your happy loved ones. But you’re moored just outside the mouth of the harbour. Then your lifeboat, and its team, goes. They drop the ropes into the water and sail away.
You might think: I can get back to port on my own. You’ve been there before, after all. And you can see it, right there, quite close. But it all feels different now. Your boat is still damaged. You need time for repairs. You need to get a new map and provisions. And you keep looking at the sky – is the storm coming back? You listen constantly, obsessively, to the weather forecast – you hear reports of hurricanes. They may be far away, but you can’t stop yourself from feeling that they are coming for you.
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