Thursday, March 8, 2012

A Very Important Update From Dad

So today was the first "late" day that we have had since we have been back in Memphis. We weren't due back at the hospital till 830 am to meet the social worker for just a consultation. But as it turns out the social worker that had been assigned to us is on an extended sick leave. Additionally the social workers replacement is on a temporary sick leave. Hence, no social worker showed up to meet us this am. Not that big a deal considering I didn't need the extra zzzzzzzzs anyway.

Next up we had a clinic appointment for clearance for chemo at 9:30. The clinic was PACKED! I believe we got in sometime around 10:30. So we were already an hour late and we just started our day.  I was really pleased to get some burning questions I needed answered regarding treatments and also hearing back that all her scans (brain and spine MRI, Lp fluid check, urine culture, blood work, urine sample, nuclear medicine check, pulmonary, audiology, psychology, physical) came back clean. You may imagine that this is a given but nothing truly is EVER a given when it comes to cancer. Just a note, this does not mean we are good to go. It only means that we continue with our plan of attack. If we were to end her treatment now, her chance at remission is 65%. Chemo will give her an additional 20% chance! So, that is a no-brainer. I got some one on one time with Gajjar to also ask him some questions about alternative treatments that I had been hearing about and his personal take on them. One of our burning questions was if there was  any possibility of cancer cells attaching to the healthy cells that Kayla is getting from her harvest. I was relieved to hear his explanation of how that won't happen for a number of reasons. One is because the type Kayla has is brain cancer and the transplant is going to be delivered into her bone marrow, it doesn't involve her brain at all. The problem with researching on the Internet is that you WILL find misleading info that will scare you. Somehow, somewhere, it happened to someone. There is always a chance of things happening. But what is more important is the findings that research has backed up, time and time again. I can only imagine how many of these questions that he has to answer in a day for his patients and judging by the sheer amount of patients that E clinic has running through there on the daily that must get old FAST. I have to say that in all fairness, he took his time and made sure to lay it out for me so that I could understand it but also didn't "dumb it down" for me either. There is a reason that he is the foremost expert on this particular type of cancer. He has a way of really calming the nerves, if there are any. God love him for that!

Once we left there we had to rambo over to B clinic(which will be taking over for E clinic) to meet their nutritionist. This was an extremely informative meeting and I was literally looking forward to it all week. Diet has always been tricky with Kayla because of her allergies to citrus and eggs. Add on to that her dislikes of smells and some tastes from radiation and the specific dietary requirements for a chemo patient and it really can hinder your options considerably. I had heard that she was not allowed any raw vegetables, only limited fruits, a special kind of pepper, only fresh food that had sat out no longer than 20 minutes, and very limited processed foods. But to my surprise and relief, Kayla is really only on a limited amount of restrictions with her diet while receiving chemo. She can have raw vegetables as long as they are washed and peeled. She can have any fruit under the same constraints. It is preferred that she eat only fresh food but it is not always required. She can eat a number of processed foods. The only thing that rang true was indeed the ground black pepper (very important, the wrong type of pepper can kill her, who knew that there were so many kinds of pepper, I mean REALLY?). She needs to stay away from raw or uncooked eggs, raw dairy, tea, undercooked meats, hot dogs and most lunch meats. This list really is not that bad, for the most part she would do that anyway, as we all would. The reason I found out that she can do this is because she is receiving an autologous transplant (basically cells collected from her own blood). Some cancer patients (mainly leukemia patients) do not have the option to do this because they cannot collect healthy cells from their own blood. Just one more of the many blessings that Kayla has received in her battle with this.

We took a tour of the chemo floor yesterday and it is OUTSTANDING! Receiving chemo is never ideal but St Judes has gone to great lengths to ensure that your experience is the best that it can be, a true home away from home feel, but an emphasis on decontamination. Kayla will have her OWN room, with a personal bathroom that can only be used by her. This is connected to a parents room that is completely separate with its OWN personal bathroom and desk plus living quarters. There is a playroom for the kids and a lounge for the adults. There is an isolated PT room for the kids so they stay physical. There is even a laundry room. Each room is light and bright and FULL of life! The kids are allowed to decorate their windows with a special paint during their stay. Anything they can do they will, but they still have rules. Patients are not allowed to leave the chemo floor unless they are receiving a procedure elsewhere. Anything they take with them must be able to be washed and dried EVERY single day to limit infections. Visitors for patients cannot be under the age of 7 (poor Anthony cannot come in!) and must be screened upon EVERY time that they reenter the room (they can come and go as they please though). Children also can only use their own bathroom and are not allowed in their parents space. They really try to make sure that you have limited all infection. And they do try to accommodate in some unique ways. Even though young visitors can't enter they are given walkie talkies from the other side of the see through "fish bowl" so that they can stay in touch. How cool is that? They truly go out of their way to keep the family environment and to continue a pattern of love, life, and adventure. This should be considered one of the true wonders of the world! I have no doubt that this is the place where we belong. The only thing that will make it complete is when we have you and aj back where you belong, with us! Love and miss you guys!
Kayla's Room
Parent's Lounge - View 1
Parent's laundry room
Another view of the room
Kid's play room
Parents lounge -View 2
The "fishbowl"

Parent's Bath
Kayla's bath

And our day finished with some fun at Physical Therapy

*bloggers note. I am sorry these pics are out of order. I got lazy! :)


  1. THANK YOU for these updates and beautiful photos. You make us real. We send such love, power and gratitude for being a part of your magical tribe. Love, Mary and Frank Hoburg

  2. Denny, you did a GREAT job as Annie's replacement today! Way to go and thoroughly describe the whole scenario to the "T"!!! Photojournalism too!! Who knew you could really do it ALL? Kayla's so lucky to have you as her personal "nurse" Dad!!! Love and miss you!!!


  3. From cousin Evan: We're proud of you, Kayla! Good luck!

  4. Amazing. Thanks, Denny for the update. Wow, I didn't realize she has to be in special quarters during this next phase. How long will this be for and is only one of you going to stay with her? xoxo Allie

  5. I was ecstatic to read early yesterday all is well and your path is clear for to embark on the next milestone, and ready to kick some big C booty. Continue to ask questions, but never forget that ones path may not be the right path of others. Have faith in your instinct that brought you here, through many sleepless nights, many hours of research and communication with specialists, you choose this path, the right path for Kayla, the one that made sense to your family and that you truly are in the best of hands. This situation is already overwhelming and you need to steer clear of unnecessary road bumps, focusing all your energy's and attentions on this path. Does that make sense, I know Anne knows what I mean, we had a long conversation about it.

    You cease to amaze me with your talents Denny! Playing words ...I new you had big skills, but you write so eloquently and factual, this is going to aide you well in your future endeavors. Maybe we can look forward to more Denny updates too, I think it would be cool to have your very factual view at times and Anne's emotional and comical view share other moments. My dear friends you truly are a remarkable team, I adore you and am so happy that Kayla has you both to advocate for her. It saddens me that AJ will be kept from Kayla, but how cool is that BUBBLE! I know your creative souls will find a way for them to connect uniquely during this process. If I think of anything I'll forward, as you know things come to me in the oddest of places, like the shower.

    God bless, I love and miss you all, Jayna

  6. Denny: Your words gave my brain a sense of relief and peace this morning. So glad to hear that the bad cells cannot attack her good ones, that her results are all clear and that they can even use her cells to give to her because they are strong! I do not know how you stand tall and powerful throughout this entire journey, but it makes me put things into perspective, the wee hiccups in life. I love you and thank God you are my brother, because you are truly a mentor, just in living your life!---Nicole

  7. We really appreciate the great update! It is so inspiring to see you guys checking out the new digs for this next healing phase. I can also imagine that Kayla and Anthony will have some fun making silly faces and goofing around on each side of the fishbowl glass. You are amazing. We love seeing Kayla's flower hat on her too. It makes our day whenever Lily and I spot it. xoxo,
    Emily (Hoburg) Raaka