Last week we had a visit from a very special couple that have devoted their time, effort and resources to start a pretty amazing foundation. It is to honour their little angel baby, Gaby, who lost her life to cancer, when she was only 7. Initially, when I read her story, I was weeping. Weeping for her, weeping for her family and weeping for all of the suffering she endured during her short life. I smile knowing that her legacy lives on in the work that her parents so lovingly do to give her the wish she asked for. She wanted to help other familes that are affected with childhood cancer. If you would like to donate to a wonderful cause, that will directly impact families that have a child battling cancer, please go to their site at Gaby Davis Foundation . They have helped numerous families, including ours.
When we were at the clinic last Friday, we spoke with the Dietician about Keian’s appetite, or lack there of. We can’t force him to eat, but I feel horrible when he doesn’t eat due to feeling nauseated from the chemo. Our major concern is obviously his lack of nutrition, which will help him to build strength for the battle he fights every minute of every day. It was recommended that we give Ondansetron, in conjunction with Gravol, regularly – until now, we have only been giving him the Ondansetron when he has complained of nausea. It has helped a little. I can't say it's helped as much as I had hoped, but it did put his nausea at bay long enough that he asked for us to take him to the Old Country Buffet in Bellingham. He's never been to a buffet and he was very fond of the idea where you have hundreds of items available to choose from. He found a love in the ham and went back for thirds! You heard me...thirds!
I’ve been craving a Mommy and Me photo shoot with my boy, and with his transplant coming up, it was more important than ever. I called upon my beautiful friend to come over on Monday night to engrain these moments forever. I am so in love with my little boy – I wake up with a smile EVERY day, because of him!
After the weekend, I expected to walk in on Tuesday morning and have them tell us that he’d be getting the NG tube inserted. It was decided, to help with Keian's anxiety that they would place it during his surgery to insert his central line. I've been talking to him about it quite often to get him use to the idea - there's quite a few little ones at the clinic that have them, so I am making sure he's familiar. I tell him he will be drinking formula, just like his baby brother, but that he doesn't even need to drink it through a bottle. He kind of gets a kick out of at these little familiarities. Tuesday was a scheduled day in clinic for an LP and triple intrathecal chemo. He’s been on the GCSF since he was discharged from his last hospital stay – they expected that he would need to be on it for a total of 3 rounds (each round is 5 days, as the port to accept the medicine into his subcutaneous tissue can only stay in for 5 days at a time). Well, we got great news on Tuesday – the GCSF worked much quicker than they expected, which meant we were a week ahead of time for the remaining treatment to begin. Sometimes it’s a weird feeling when you feel yourself getting excited when treatment can finally commence, but on the other hand, every day that it’s delayed due to low blood counts or neutropenia, I panic that the Leukemia will creep back in. It’s all enough to make you want to scream – having treatment, not having treatment… (I have to admit on more than one occasion I have been driving by myself and have made the loudest sounds that my breath can muster. “I wanna scream and shout and let it all out!!”
This week has been packed…something that has made Keian smile every day! For those of you that have helped put those smiles back where they belong, thank you!<3 Those classic Keian smiles adorned with those squinty little eyes.
Wednesday afternoon, a huge box was delivered addressed to “Team Keian”. Some very special ladies that have been a huge support, in so many ways, sent along a HUGE tote packed with pretty much every craft supply you could ever think of! This is going to take some of those boring moments of being stuck in a hospital bed and turn them into fun and fabulous works of art!
Today, Keian’s Grandma and Grandpa planned a special day at the Aquarium and then out for fish n’ chips – a little ironic? Ha. When they dropped him off, he couldn’t stop talking about everything that he saw. Even when I was tucking him into bed, he was still intently telling me how a sting ray releases their poison and what the seal was doing with the ball on his belly. I don’t think it’s any surprise that he had a great day!....Oh but wait, the day is not over! I got a message from another very special lady that told me that she, along with even more special ladies, will be making us some meals for us while at the hospital. Absolutely amazing! That's one of the things I'm finding the hardest is planning and making meals - it seems we are always out at appointments and then we're always so tired and it's late, so we just eat whatever. After a long day, Keian still managed to have some energy to play Toy Story 3 on the Wii - thank you to yet another wonderful Mommy and special little boy that wanted to bring some joy into Keian's day.
Tomorrow, we’ll be back in the clinic bright and early for a kidney function test. The next block of chemo, being high dose, is very hard on the kidneys and they need to make sure they are functioning correctly before administering anything. He’ll be well hydrated with ‘Mr. Water’ and will undergo 3 separate CT scans throughout the day to determine the effectiveness of his kidneys. After the day at the hospital, we’ll be on our way to Gramps’ house for dinner and a visit.
Monday it becomes alot more real and brings us into the moment - coming to the realization that in under 6 weeks, our baby boy will save my big boys life! He will be going in for surgery to remove his VAD and replace it with a CVC (central line) - this will allow him to receive the medications required for support throughout transplant and recovery. They will also be inserting the NG tube, which I’m hoping will take some pressure off of him to eat when his body really doesn't want to, but also help him to gain strength to continue his fight. Joren will spend the day with his Grandparents, so that Ryan and I can devote 100% of our energy towards Keian after he is brought into recovery. We’ll be able to come home that night to sleep in our own beds, but we’ll be packed up and ready for admission the following day. This will be the first of 2 long admissions – this time being approximately 35 days. The longest Keian has been in the hospital is 2 weeks, which was when he was initially diagnosed. It’s going to be a long, hard road, but this road is well worth travelling, as it will make our boy healthy and he will come out on the other end flashing those beautiful bright smiles, from a healthy body! We were given booklets to research on Bone Marrow Transplant – I say research, as I find it nearly impossible not to use Google and purely rely on the words written in the text in front of me. I’m sure many families that have gone through this protocol, could say the very same thing. We will spend the weekend going over them and show up to the family meeting on Tuesday armed with the million questions that they are so used to hearing. I would rather know every little thing, so that I can be prepared, rather than be unprepared, wishing I would have known.
"Hope is a wonderful thing, something to be cherished and nurtured, and something that will refresh us in return. And it can be found in each of us, and it can bring light into the darkest of places"