Wednesday, November 25, 2009
Day +238: SO MUCH To Be Thankful For
It's day +238 for Max and Thanksgiving Eve and we are feeling as grateful as ever! We had Max's regular bi-weekly visit to the Day Hospital last Friday and left on cloud 9 as we received one piece of good news after another! Dr. Davies and I had a great discussion about many things and it was decided that it is time for Max's central line to come out! This is a HUGE step in the right direction, to say the least! Max has a bit of apprehension about it because it does mean that he will have to get an IV when we are down there for lab draws of his blood and medication infusions...but, the other huge piece of good news is that we are now down to once a month visits to the Day Hospital!!! Thus, Max agreed that he could get through an IV once a month. We discussed it at length and Dr. Davies and our Nurse Practioner, Paula, were very helpful in explaining to him that they will provide us with numbing creme that we can apply before we leave home so that the areas they will use for the IV will be nice and numb and hopefully it will be much less painful as a result. I reminded him that he was getting IVs 4 or 5 times a week back in January and February when we began this journey so, having one once a month should be much easier for him to handle. Dr. Davies and I are both relieved at the thought of having the central line removed because at this point, it poses a large infection risk for Max which would be very serious and it just isn't worth the risk any longer. Max is scheduled to have the outpatient surgery next Wednesday, December 2nd at 2:35 pm. It should be a quick and easy procedure for them to remove the line but, since he will have to be put under for it, we would still appreciate any and all prayers and thoughts for Max at that time.
In addition to the line removal, they drew extra immune study labs on Max last Friday to determine if we can cut the profilactic meds that he remains on at this point (an antibiotic, antifungal and antiviral). We should know fairly soon and if we can cut them, it will put Max down to 1 med a day!!!!!! His immune suppression med, Cyclosporine, will continue for the entire first year but that would be all that is left. Dr. Davies has said in the past that Max could return to school and other activities, potentially, while still on the Cyclosporine. It goes without saying that one medicine and no central line will be serious progress in the very right direction!!!! Woo Hoo!!!
The additional good news that we received is that Alex can return to school in January! He was excited to hear this and we all agree, including Dr. Davies (this just shows how awesome she is...even thinking about Max's siblings all the time in this process) that this is important for Alex. We need to re-introduce him to reality as well and let him experience the life of a typical 5 year old again. I am certain that it is going to take some extra work and tender loving care to get him re-introduced and comfortable with school again, as it will have been almost a year since he has been there too. But, it will definitely be another great move in the very right direction for our whole family.
So, as I'm sure you can imagine, all of this positive news has been exhilarating! However, we have had more difficult news throughout our BMT family over the past week. Three of the families that we grew to know and love during our stay at Children's have experienced significant complications and grief this past week. Natalie Bradley, a beautiful senior from St. Ursula Academy here in town, passed away last Friday after a very intense and extremely difficult battle with leukemia. Only a month or so ago, things looked promising for this young lady. Her brother had been her bone marrow donor and she was considered to be in remission...only for the leukemia to return with a vengenance and ultimately take her life. Very, very devastating. Two of our dear friends whom we spent much time with in the BMT unit are also enduring difficult struggles. Little Ethan Alfred, a sweet 15 month old boy who received his life saving bone marrow transplant the day after Max and "lived" next door to us for weeks, is currently in the Pediatric Intensive Care Unit at Children's with serious breathing and bone issues. His mother, Kathy, has been by his side for over a year now throughout his journey, leaving her three other children back home in Minnesota, barely able to see them. It is heartbreaking and exhausting for her to see Ethan in this state now. She clings to the hope that remains for him to beat this current problem and go on to a full recovery and a life filled with promise. Finally, our dear friends, the Snead's, who's 7 year old son, Preston, has undergone both a liver transplant and a bone marrow transplant for HLH. They have determined that Preston has an aneurysm in his hepatic artery (main artery to the liver) that needs to be operated on as it is causing blockage of blood flow to the liver. This will tentatively be done next Wednesday and is a very risky procedure, the doctors have told them. Preston has been doing very well with his bone marrow transplant and feeling better and better everyday so, we are hopeful that he will also overcome this latest setback and go on to a promising and long life. Preston is one of the few other BMT kids that Max has actually had the chance to meet - although it was through the window in the door of his Day Hospital room. Max asks me about how he is doing every day and is sure to include him in our prayers every evening. Preston's mom, Jasey, and I look forward to the day when we can let "P" and Max play together like two 7 year olds should!
I share these stories with you for two reasons - to ask you for your thoughts and prayers for these families that we hold dear to our hearts and to help you to even further appreciate your blessings at this Thanksgiving time of year. Before we had to walk in these shoes, we had no idea of the kind of suffering and hardship that families were enduring; we had very little to no appreciation or recognition of the blessing of our family's good health. We will never, ever again take it for granted and will be sure to be forever grateful for good health. I hope that by sharing these stories and ours with all of you, it will make you ever more thankful for your blessings.
We have a very fun-filled Thanksgiving weekend ahead and we are greatly looking forward to it! We will spend lots of time with both the Meyer and the Sherwin families tomorrow, including Max's favorite Thanksgiving activity, the Turkey Bowl (a touch football game that all the Meyer boy cousins and dads play up at Turpin High School's official field). We are excited to decorate for Christmas on Friday and then have more family activities/parties planned on Saturday. The holidays will definitely be extra, extra special for all of us this year. We are so grateful that Max is doing as well as he is and that we can be with our families to celebrate these special times. Our thoughts will continuously be with our fellow BMT families that will not be so lucky.
We so appreciate your continued caring interest in Max and our family and your ongoing thoughts and prayers for all of us. They have made all the difference in keeping us strong and positive throughout this journey. I will update more next week to let you know how Max's line removal surgery goes and to keep you posted on our friend's progress.
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)