Friday, August 28, 2009
Another good reminder of how careful we need to continue to be. The nagging thought in my head the last few days has been, "we did too much...we have to be more careful...after all, it's only temporary." Max and I had a great conversation on the way down to the hospital this morning and we agreed that we just have to be extra, extra cautious. We realized as we were talking that we are already over halfway through the most intense part of this journey. He asked how long he has been doing this and I told him since January and then we counted the months - almost 8. I had been explaining that we just really need to be careful for the whole first year post his transplant so then we counted the months until April 1, 2010 - just over 7. At that point, we realized that we are over half way there and decided that we can do this, no problem. We are just going to buckle down (not like we haven't been already but, we are going to double buckle down) and try to keep everyone as safe and healthy as possible.
With this in mind, I talked to the nurses and doctors today about Alex and school and I think we may hold off for a bit. I just don't think I can take the stress of sickness in the house - and I know Alex will get sick at preschool, everyone knows that is a germ factory, unfortunately! Not to mention the swine flu that we keep hearing has popped up more and more around here. So, the plan at this point (which I still need to discuss with my husband - sorry, Matt) is to hold off on school until maybe November or so. We are hoping that the swine flu vaccine will be approved by mid-October and have been told by our docs that our whole family (with the exception of Max) needs to be innoculated and will be tops on the list to receive it down there. We will all get the regular seasonal flu vaccine by then too so the combination will give us a huge layer of protection against the most evil of germs. By that point, Max will be 7 or 8 months post transplant too and the more time, the better for his little "Ellee Cell Garden". I hope that I will be able to relax and deal with germs a little better by then too.
So, that's it for today. Breathing much easier tonight, although still watching our Maxer closely. We're having a fun night too. We had planned a sleep over at Mama and Papi's since Daddy is gone and Max said today at the hospital that there was just about nothing that could keep him from doing that tonight. Luckily he seems to be feeling better and is enjoying playing basketball with Papi and Alex in the basement right now. We have a big game of musical chairs planned for a bit later. I know I'm exhausted already and I'm sure Max is too - we'll all be in bed by 9:00! :)
Thanks for your continued love, thoughts and prayers and for all of you that have signed up to walk or donated already! We have been touched to already see such amazing support of Max and our family...you all rock!
Peace and love,
Kristi (and Matt, Max, Alex and Ellee..and Mama and Papi tonight too)
Thursday, August 27, 2009
On another note, I have heard that there has been some difficulty with registering for the walk through the Max's Mighty Mob page and link that I provided in my last post. If you cannot register that way, try going in through this link: www.cincinnatichildrens.org/walk Once you are there, click on "Register". You'll have to put in some personal info and then it will give you a couple of options, one of them being to "Join a team." Click on that and then type "Max's Mighty Mob" in the box. It should find us and you can then add that to your registration and you will show up on our team page as part of the team. Let me know if anyone has more trouble at email@example.com. If you want to donate, you should be able to do that by following the directions in my last post.
As I've said before, the bone marrow transplant process is a long roller coaster ride. Downs like the one we are experiencing now are part of the "ride." We are just hopeful that Max will come through this small setback with his hands high in the air yelling "yippee" and continue on that way for the remainder of the "ride."
Thanks for all your love, support, thoughts, prayers, etc. More soon...as I know it.
Peace and love,
Kristi (and Matt, Max, Alex and Ellee)
Tuesday, August 25, 2009
For example, this morning we decided to go for a little walk/bike ride, something which we have been doing quite a bit the last week or so. Alex and Ellee ride in the double stroller and Max rides along side us on his bike. We decided to try out the Little Miami bike trail about 10 minutes from us and found that it was perfect. It was mostly shady and cool since we went in the morning and Max lasted for almost 40 minutes, riding along and enjoying being outside. Once we finished there, the boys noticed the little putt-putt golf course nearby so, we drove over to check it out. It too was perfect...shady and nobody there! So, we played a round of putt-putt as well! It was a really fun morning. Thankfully, we are finding more and more creative ways to get out for a bit, like this. What made this morning even more enjoyable was the fact that school started today for the kids around here. At least one good part of this for Max is not having to head back to school yet! He still gets to have a little bit of summer fun...although nothing like a real summer.
We got to go and meet our new little family member last Saturday, which was really fun and exciting! The boys are now calling him "Spud", short for Spud Webb, one of their favorite basketball players (may have something to do with his height :) ). I think it may stick so, we may have a dog named "Spud" arriving here in about two and a half weeks. I am excited about it and the boys can hardly wait. They talk about him everyday and ask me questions about what he will do, where we can take him, etc. It will definitely add some excitement (and maybe a bit of work) around here!
We have another exciting event coming up that we are hoping all of you will support in one way or another. I have created a team called Max's Mighty Mob to walk in the Cincinnati Walks for Kids event on October 10, 2009 at Coney Island. The money raised for this walk supports Cincinnati Children's Hospital and specifically, I am asking that the money that our team raises be directed to the Hematology/Oncology unit at Children's and Dr. Davies. This is an awesome and fun way to give back a bit for everything that the doctors and nurses at the hospital have done for us...and it is nothing short of a miracle as those of you who have followed our journey know so well! So, if you would like to join us in walking on Oct. 10th, please follow this link to register: http://giving.cincinnatichildrens.org/netcommunity/maxsmightymobs If you can't make the walk but would like to contribute to the funds raised in honor of Max, you can follow the same link above and give a donation, under the "Support Our Team" area of the site. If you are going to join us at the walk, please send me a quick email too (firstname.lastname@example.org) because I am going to get t-shirts for everyone to wear also! I will keep updating everybody on our status for the walk through the blog also. Thanks for your support!
So, as you can see, things are good...life is good. We are settled into our new life at this point and making the best of it. We know we just have to remain patient and continue to give Max's little garden time to bloom. In the meantime, we are enjoying our time together and our much slower paced lifestyle. It is a bit of a weird spot, however, I must admit. While Max appears to be doing so well, if we were to be able to somehow view the inner workings of his circulatory system, we would find him to be in quite a rough state. He still cannot fight off most germs on his own and would require hospitalization to make it through a fight against just about anything bigger than a slight cold. If he were to catch the flu or some other viruses (like CMV, EBV, adeno to name a few...all fairly common), he would most likely not survive. Thus, while we are getting our old Maxer back more and more everyday, we are still in a terrifying spot. We just know that we have to continue to protect him as much as we possibly can from these icky germs until his immune system is back up to full par. As I've said before, that will hopefully be about one year post transplant, however he will still require re-immunization for all those really major germs after that point. Bottom line...we still have a long way to go.
Sometimes when I check on him at night, sleeping peacefully in his own bed, across the room from his little brother, I am struck by the magnitude of what he has been through...what we have all been through, in these past 8 months. I am just so thankful, just eternally grateful for the miracles that the doctors are able to perform today. We would all be in such a different place in our lives if our Maxer were not here. Please join us in giving back to the wonderful caregivers at Cincinnati Children's Hospital by supporting the walk on October 10th. Thanks!
Peace and love,
Kristi (and Matt, Max, Alex and Ellee)
Tuesday, August 18, 2009
Kristi (and Matt, Max, Alex and Ellee)
Tuesday, August 11, 2009
We have had another good week overall. Last Friday's visit to the Day Hospital was pretty uneventful. We did have a nice discussion with Dr. Joshi since Dr. Davies was not there and Max shared all of his pictures from the Reds game with her and our Nurse Practitioner, Paula. They both asked for some copies of them to put at their desks, along with one of Max with Alex and Ellee. They have treated our family so kindly and always make us feel special. We have some prints ready to take with us for them on Friday.
The major issue that we continue to watch with Max is his engraftment level. It has been fairly stable around 85 - 90% for the last few weeks and we are hoping and praying that it stays stable around that mark. We have also been working with our Nurse Practitioner and the doctors to keep the level of the immune suppression medication, Cyclosporine, in Max's blood at just the right point. Finding the right balance with this med has proven difficult. We want it to be at a place where it is preventing the original t-cells in Max's body (those that originally attacked his marrow) from doing it again while at the same time, not being too high that it will damage Ellee's marrow and hurt his engraftment. Thus, we are continually monitoring this level and had to make a quick trip down to the hospital again this morning to check it and make a minor adjustment to his dose as a result. Dr. Joshi told me last Friday that if his engraftment level does not begin to stablilize over a period of several weeks, the doctors will need to "regroup" to come up with a plan for Max. Made me a bit nervous, to say the least. Sometimes just when you start to settle in to things in the BMT world and get comfortable, your seat is pulled out from underneath you. Thus, we are praying for a stabilized engraftment percentage and no need for an action plan for Max.
On a positive note, we did discuss the schedule for hospital visits briefly with Dr. Joshi on Friday and the hope is that we will be able to go down to every other week visits at about the 5 months post-transplant mark (September 1st) and will revisit going down to once a month visits at the 6 months post-transplant mark. As you may remember, it is when we are down to once a month visits that we will think about removing Max's central line, something which we will all be extremely excited about! That will be another huge cause for celebration!
We had another full weekend of fun activities around here. A step-cousin of Matt's was married on Saturday night and Matt and I enjoyed another relaxing evening with the Meyer side of the family (that's where the suckers came from in the picture above). Sunday we celebrated cousin Andrew's 10th birthday with the Meyer's and the kids had a ball, as usual.
We are absolutely settling in to our "new normal" although there are parts of it that we hate and are anxious to have over. We have not seen my neice and the kid's cousin, Audrey (my sister's daughter) in over a month. She is 2 and, as all 2 year olds do, has picked up a few germs lately and had a rough couple of weeks with a stomach virus, fever and rash, etc. As a result of these germs, I asked the doctors about how they felt about us visiting with her at this point, once she is well. They recommended that we not see her until Max is 6 months post transplant, or possibly after October 1st. Obviously, that is difficult to hear and to imagine. My sister and I have been able to see each other and we are going to try to at least get Ellee and Audrey together to play outside when Audrey is well as they LOVE to play together. Thankfully, my sister understands our situation completely and knows that we just have to practice patience until we can all be together again like a "normal" family.
As a whole, we are all happy and enjoying life although, as I've shared many times, we all have our moments here and there. I had another one of my moments at the wedding this past weekend. The band was playing one of my favorite songs, "I Hope You Dance", which can be a tear jerker as a mom under normal circumstances. I was doing completely fine, enjoying the evening, when all of a sudden about half way through the song, I thought, "I hope Maxer dances...I hope I see him dancing at his wedding..." and I had to run out of the room and hide for a minute. I know that everyone would have understood "my moment" and that I could have cried in front of everyone but, I just don't want to do that. I want to KNOW that I will see him dance at his wedding and I don't want to let myself think any other way, especially considering how well he is doing at this point. That darn worry and insecurity always finds a way to sneak its way in...and I think it's good, in some ways. It makes sure that you don't take one minute for granted and that you appreciate the time you have with your loved ones...every second.
Many positives are coming out of this situation, too. Last night, my mom arranged for a group of us to go down to the Ronald McDonald house to bake goodies for the families staying there. Although in some ways it was a bit tough for me, emotionally, it was such a powerful feeling to know that, by participating, I was turning a difficult time in our lives into something positive for other people struggling through similar situations. I got to witness first hand the joy that a simple chocolate covered strawberry or a cupcake can bring to someone's day. I did run into a couple of families that I met while we were in the BMT unit and there are mixed stories. Some are doing well, others are not. It's a tough place to be, as I know, and I want to do everything I can to make it as easy as possible for these families to get through. As one of our friends from the BMT world recently put it, "A negative by-product of this experience has been coping with the deaths and serious health issues of children. Ignorance to this was nice. However, when we were ignorant to these issues, we were not doing anything to help. With this awareness, we are now in a position to do something to help." (Thanks, Rick and Lynne) I have seen SO MUCH need for help...it's overwhelming at times. I have a to do list that I am beginning to work on. At the top of it are registering to be a bone marrow donor and regularly donating blood, along with regularly volunteering as we did last night at the Ronald McDonald house and getting involved with the Champion's program at Children's which helps families to give back to the hospital...among other things. We know that many of you have already been moved to join us in these causes and we are honored. It is the most tangible way that we see the positive impact of Max's situation.