The Superheroes...Live and in Concert

Jeremy caught Desmond and Regan performing just before they "shut down shop" for the night. Recorded 4/28/2014. They are singing Desmond's theme song, Radioactive by the Imagine Dragons.

Results from mid-treatment scans

Desmond had his mid-treatment scans on Wednesday morning, an MRI and a chest CT. Apparently rhabdo likes to spread to the lungs, which is why a chest CT is standard protocol. He was under general anesthesia for the MRI, but awake for the chest CT. I was able to be in the room with him for the CT and it went pretty quickly.

They love their animals!

We met with our oncologist yesterday to discuss the results, and they were good! Desmond's tumor is shrinking, and the doctor is pleased with the progress he is making, we will continue on our protocol as scheduled. We could still see a little bit of the tumor "light up" on the scans, meaning there is still a bit of active tumor in there, but the doctor said that is normal and radiation and more chemotherapy should kill off those active cells.

Swinging in the park, just a few hours after having his stent placed. 

We were suprised to hear that Desmond's counts were down yesterday, the doctor suspected his counts were not down from chemo (since it has been more than 2 weeks) but rather from a bug or something he is trying to fight off. Sure enough, this morning he woke up with a stuffy nose. If his counts don't go back up by Monday, that will delay our next round of chemo and radiation, but for now he is scheduled to have chemo again on Monday, and radiation will begin on Tuesday.

Hairstyles by Regan. Call for an appointment.

We will go to radiation for 25 weekdays; every morning we will go in at 9:30 am and expect to be there until about 11:00. He will get his port accessed on Mondays and leave it accessed until Friday. I don't have any idea whether he will feel like going to daycare during the radiation weeks, I hope that he does because it's good for him to get the socializing and learning they provide. He is really too smart for his own good. We haven't decided yet what we will do with Regan, if we will send her to daycare more often of if we will just bring her to radiation treatment with us.

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On Saturday, July 19, at 7:00 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'd be happy too, if somebody pushed me on the swing for 45 minutes straight. 

What we've been up to...

The last few days have been very busy, even though we were hoping to have a break! On 5/1 we celebrated #payit4ward4des by asking our friends and families to complete random acts of kindness for strangers, in honor of all of the love and generosity that has been shown to us since February. It was a huge hit, and I think everybody that participated really enjoyed it!

On Saturday we had a party at Don Diego's Mexican Restaurant in Meridian for a luncheon to celebrate being halfway done with treatment. It was good food, good friends, and a lot of fun!

I can not emphasize enough how blessed I feel to be surrounded by such wonderful and caring friends and family. It brings me to tears. 

This week is also busy for us. Tomorrow Des will have his mid-treatment MRI and CT scan to ensure that the chemotherapy is working to erradicate the cancer. On Thursday he will have a stent placed in his lacrimal tear duct to ensure that the tear duct stays open during radiation and can drain properly. The stent will keep scar tissue from forming in the drainage area. On Friday we will meet with the oncologist to discuss the results of the scans. We are expecting to hear good results!

Next Monday, 5/12, we will start chemo again and 5 weeks of radiation. We decided to stay in Boise for the radiation after weighing all of the pros and cons. It was a relief to make that decision, and we trust our radiologist to give Des the same high level of care that we would find anywhere else. 

If you are interested in more regular updates, feel free to join our Support Superhero Desmond Facebook page: https://www.facebook.com/groups/252094811617855/

Those who have the least...

One thing I have learned over the last few months is that those who have the least, give the most. Time, food, money...I have been left speechless, several times, upon receipt of a gift from people who could certainly use the gift themselves, but have chosen to honor our family instead.

For example...

• Jeremy's mom and stepdad, who work four jobs between the two of them, and have put together two amazing fundraisers in less than 6 six weeks, running all over town doing advertising, picking up raffle tickets, and sending thank you notes, along with attending appointments with us, organizing meals, and and babysitting at a moment's notice.
• My friend Lindsey, who has been saving up her vacation time and all her pennies for over a year for a bucket list trip to Nepal, surprised me by buying a plane ticket to visit my family just 2 weeks before leaving on her 3 week trip. She knew I needed her, but wouldn't ask her to come, so she took it upon herself to make it happen. 
• A teacher my mom works with lost her husband to cancer in 2012. He was diagnosed with terminal brain cancer on the day their first child was born. She has sent so much food our way, prewashed and cut veggies and homemade meals, insisting that she has plenty to "pay forward" for the kindness that was shown to her during her husband's illness. 
• My girlfriend Mia, who is just getting her feet under her after her own difficult year, signed up to bring us four meals, and is organizing a fundraiser as well.
• My friend Robin, a long-time vegetarian, decided she needed to honor our Paleo meal requests and tried to cook her first chicken in multiple years...with a 3-month-old on hand! Now, that is love!!

Blankets, games, gifts, gift cards, cash from people we don't know...the list could just go on and on. We can never hope to repay it, but we can certainly try to pay it forward. For the rest of our lives, we will be paying it forward!

Hospital stay 4/21

Des stayed in the hospital overnight on Monday evening. He received his chemo treatment at about 5pm and was throwing up a few times by 9, even with receiving nausea meds at regular intervals. 

Around that time he was watching Scooby Doo and told me that there were "2 Freds on the screen." I didn't think much of it, but he was clearly having some vision problems with his right eye (the tumor eye) so I mentioned it to the nurse and she called the on-call doctor, who told us that we could get Des in for a CT scan right away. He told us it was our choice, but that he advised it as double vision can be a sign of pressure building behind the eye..

I felt really torn and scared; on one hand I want to keep the amount of scans he gets to a minimum, as long-term side effects of all of that radiation are not clear, but on the other hand I was afraid that the tumor was spreading and that we'd need to see it right away. It seemed the right choice was to get the scan, so at 10:00 we were wheeled (with Des on my lap) through the empty halls of the hospital and down to the 1st floor, where the scan room is. 

I was really proud of Desmond for how he handled the scan. At first he said he was NOT going to lay down, but I told him I'd be right there next to him holding his hand the entire time, and then he just laid back and kept his head pretty still with really wide eyes. I don't think I'll ever forget the surreal feeling I had of watching my baby take it all in, while trying to reassure myself that the double vision was a side effect of the nausea drug and not something worse. I couldn't help but fear that we've had it too easy thus fear, that this was the other shoe dropping. 

The scan itself took just a few minutes, and we passed the time by talking about how men have walked on the moon. Des wants to be an astronaut someday, apparently. This is news to me!

The CT scan did come back clear, the doctor called a little after midnight and said that the scans looked fine but that Des showed signs of a potential sinus infection so we were prescribed an antibiotic for that. We stayed in the hospital till about 4:30 the next day, Des alternating between sleeping and throwing up. 

A quarter complete....

Wow! I have been so overwhelmed by all of the kind words, positive vibes, prayers, meals, gifts, phone calls (some still unreturned, I'm sorry Aunt Doris!), and donations that have been sent to my family. Thank you all so very much for thinking of Desmond, Jeremy, Regan, and I at this time.

Desmond is in outpatient chemotherapy today. This is treatment 6 of 24. Woohoo! 25% of the way to completion! I expect that we will soon begin figuring out the details of his radiation, which will begin around treatment 12. So far the doctor is very, very placed with how his body is handling chemo...the only side effects that we have noticed are the hair loss, and a little bit of joint and bone pain at night. No mouth sores, no extreme nausea, not a lot of weight loss...things could be so much more difficult, we are thankful he is doing well.

Thank you to MiraBella Salon and Spa in Boise for an amazing fundraiser on Saturday, 3/15, and to all of the companies/individuals that donated raffle prizes. You raised $2800, all of which went to Desmond's care account.

Desmond's medical bills just keep rolling in, but I have paid so many of them in full thanks to the kindness of all of you. It is such a relief to be able to just call and pay a bill instead of worrying about setting up payment plans, or having additional "maintenance" fees added to our acounts. It is one less thing for me to have on my mind.

Thank you all, again. There are not enough words in the world to describe what your support means to me.

What outpatient treatment looks like. His port is accessed (on his chest, by his heart) and he gets his medicine through that IV pole you see in the picture. Normally he does wear a shirt, but I guess he was welcoming warm weather!

I am mad

I am mad that we have to go through this. I am mad that Jeremy lost his job and each time he is sure that he has a great interview they pick somebody else. I am mad that Desmond can't go to school when he wants to, and that he has to have people poke and prod him when he doesn't want to be poked and prodded. I am mad that there are days when I just sit in my office at work and can't seem to do anything other than worry. I am mad Idaho is not a medical marijuana state, so we could safely give Desmond something natural to help him feel better and keep his weight up so he doesn't have to get a feeding tube. I am mad that we have to pump his little body full of poison every week, poison that might take away his ability to have kids. I am mad that there are so many other little kids going through the same terrible and even worse crap that Desmond is, and that a lot of them won't make it through. I am mad that I lay awake at night wondering if something will happen to Regan. I am mad that, as the mom of a kid with rhabdo, I am at an increased risk of breast cancer, and that when I cough so hard I think to myself "I wonder if this is what it feels like to have cancer in your lungs."