It was a REALLY busy day for us! Is was so busy, I wasn’t able to get to the computer and post an update until now – phew! It’s 10:00pm and Kaylee is tucked into her bed. I bet you can’t figure out what she’s watching on her DVD player right now? Yep, you guessed it – Spongebob! So let me start with our morning. When the clock hits 7:30am, our door becomes a revolving stream of nurses, doctors, house keepers and food service members. First thing this morning, the nurses came in and informed us that Kaylee needs to sit-up and walk today – she can’t lay in bed all day anymore (exercise). This didn’t go over well with us since we knew how hard it was for Kaylee to move – her leg/hip hurts really bad… (more on this in a bit)
After a few more visits from the nurses and the food service members, Kaylee’s primary care team visited us and spent 90 minutes talking to us. They didn’t even realize we talked that long. It was a really good talk – we learned allot in that 90 minutes. Kaylee’s primary doctor, Dr. Levien (Grand Daddy) told us that by the time we are through with this, we’ll have a degree in medicine. We’ve received so much information up to now, it’s almost information overload. While talking to the doctor, nurses and the social worker, it was decided that Kaylee should have a Physical Therapist come in and play some games with her and help strengthen her leg’s, arms and any other part of her body that hasn’t really been used that much the past week. We thought this was a good idea since the nurses asked us to get her up and moving around some today – this was a great opportunity to make this happen.
In the meantime, Kaylee has been taking lots of different medications; some through her Broviac Catheter and one orally. The oral medicine is really yucky according to Kaylee, so we started to mix it with chocolate milk – yummy. The oral medicine is needed in order to complete an MIBG scan. An MIBG scan uses a chemical called metaiodobenzylguanidine that is slightly radioactive to identify areas where the neuroblastoma has spread. It is a very sensitive method of detecting the spread of cancer in bone and soft tissues. This test will occur sometime around 1:00pm tomorrow.
I’m getting ahead of myself here… I’ll tell you more about tomorrow, in a bit.
So, we found out that one of the reasons they wanted her to get up and move around a bit was because they needed her to have a bowel movement… she hadn’t had one in a week. We’ve had her on a few different stool softeners, but their really not effective if your not up and moving around. Well, low and behold she had her first bowel movement later in the morning – yay!
Soon after the bowel movement, two more nurses; Holly and Linda came in to visit us. Holly and Linda are two more nurses on Kaylee’s primary team. I think we’re up to 6 doctors and nurses on Kaylee’s team. They talked with me a bit while Carol attended to Kaylee. They really didn’t tell me anything new, or ask a whole lot of questions… the one question they did ask, was how much have we discussed Kaylee’s disease with our son; Kyle. They encourage us to sit down and be as open as we can with Kyle and make sure he’s not left in the dark. We have full intention of talking to Kyle and making sure sure he doesn’t feel left out. Kyle REALLY misses his sister and just wants her to come home. I think some of her changes; Hair loss and lack of spunk/energy is going to be tough for Kyle to adapt to, but we will be there to help him through it.
While I spoke to Holly and Linda, a few more nurses came in to give Kaylee a hearing test. I didn’t stick around for the hearing test – my father and I stepped out to go to the store and relax a bit. I think her hearing test lasted around 90 minutes (phew!). When we returned to the room, Kaylee, Carol and my mother were not in the room – they had all gone down to the play room. I noticed the red wagon was missing, so I assumed they took her to the play room in the wagon. This is huge – that can only mean that she was sitting up. There’s really not enough room for her to lay down in the wagon. My father and I were just about to go down and meet up with the rest of the family when uncle Jesse (Jesse Guimbellot) walked through our door – surprise! We knew Kaylee would be surprised and delighted too.
Here’s the REALLY cool part. When we walked into the play room, Kaylee was sitting on one of the toys in her own clothes (shoes included) and was rocking the toy back and forth to music. She was doing this on her own, and with no pain. This brought a few tears to my eyes (happy tears). Then the really exciting news — Carol told me that Kaylee walked (yes, I said walked), with Carol holding her hands from the bathroom door, around a table and back to the toys, and never once said anything about the pain in her leg/hip. Walking back to the play area was Kaylee’s idea. I think she was just so excited to be out of her room and out of bed – she almost forgot how to be a child. This is a HUGE step forward, and we haven’t even started her chemo yet. One of the stipulations around leaving the room and roaming the hospital was that Kaylee needed to wear a mask to cover her nose/mouth. We don’t need her picking up something else just before her treatments begin. In order to make sure Kaylee was comfortable, we all decided to wear masks too, so we all looked like Kaylee.
Before we headed back to the room, we stopped off for some dinner in the cafeteria and got to see a really HUGE pumpkin. Kaylee wanted to make one big pumpkin pie with this pumpkin – :-) After dinner, we headed back to the room where Kaylee undressed herself completely and put on her own pull-up and hospital gown. We got her all snug in bed and turned on her Spongebob… remember I mentioned that around 10:00pm (a few paragraphs ago) – guess who’s still awake and watching Spongebob at 11:00pm.
So the last thing I wanted to mention was what we’re doing tomorrow. Other than the MIBG scan I mentioned earlier, Kaylee also has a Renal Scan scheduled at 7:00am. A Renal Scan is used to help diagnosis kidney disease and certain problems with the rest of the urinary tract. It is primarily used to evaluate the function and size of the kidneys. This scan test will begin at 7:00am, but will continue all morning until around 11:00am (just before we start preparing for the MIBG scan).
With both of these tests out of the way, she should be cleared to finally start her first round of chemo treatment. I’ll try and update the blog earlier in the day tomorrow since it’s going to be another long day of tests, tests and more tests. We should be in the room most of the morning.
Until tomorrow, we love you all and thank you for all your kind words. Kaylee sends each and every one of you a big hug and kiss.