Monday, March 4, 2013

Is there any news on Joey's progress?

To all those who continue to ask about Joey Caretti, here's the latest update that comes from his mom, Lisa. Your ongoing thoughts and prayers are so very welcomed and needed to see Joey through to a full recovery.  This young man truly deserves to get back to having fun as a 13 year old, don't you agree?


Dear Friends & family, 


We are all very eager to see spring arrive this year. The winter has been long and somewhat depressing with one day pretty much the same as the next. Joey either has a bad headache, severe stomach pains or some other ailment that not only takes over Joey's day, but deeply affects all of us. It is unbearable to watch him suffer. Some of his symptoms could be from the GVHD, or from all the medication he takes or perhaps side effects from all the chemotherapy he has had in the past. On the days or times he does feel good we always make the most out if. 

When the weather warms up Joey can go outside and I think this should help a little with his mood and with the pain in his joints. I have been trying to find a support group and some counseling for Joey to help him through all of this and was surprised at what task this has turned out to be. I thought with all the children (even around my own home) that have cancer, there would be plenty o f help available. This is not the case, however as with anytime I research a topic I find all kinds of other helpful information that I would have not known about before. 

He still is a sweet and thoughtful boy and he has expressed to several times that he is sorry he has to be this way for the family. As if he was letting us down in some way. I do my best to explain that it is just so hard for all of us to see him have to go through this. I cannot promise him that one day he will feel better, but I try my best to make each day the best that it can be. I am always looking for things that he can do (since he still cannot attend school or many other activities) and research ways to help him now. 

My goal has been to participate in one fundraiser a year to help bring in funding and awareness for childhood cancer. I can personally count eight children that are somehow connected to me that have or have had cancer. (This is not through any type of support group or organization.) I think that is alarming. I believe I must do something to help fund research for not only the sake of my child, my future grandchildren but for all children. 

This year my family is joining efforts with St. Baldrick's on March 16th in Romeo for their head shaving fundraising event! Joey's former home care nurse Melissa sent me a text saying she will be getting her head shaved that day in honor of Joey. We were so touched, we all wanted to get in on the event and raise funds. Joe volunteered to get his had shaved after Joey said this would make him happy. (I must say I was glad he said he did not want me to do the same and that I would not look that great bald) We will all be there as a family on March 16th to watch my husband get his head shaved and would love if anyone joined us. Joey has his own page on the St. Baldrick's website if anyone should want to make a donation in his honor. (A big thank you to those that have already found the site and have done so!) I k now there are so many wonderful charities that pull at our heartstrings, so please do not feel you must. 

Here is the link to Joey's page: http://www.stbaldricks.org/kids/mypage/5066 if you want to take a look. 

Once again, I thank you for your prayers & support for our entire family. 

Much love, 
Lisa 

Monday, February 18, 2013

Can you help spread the word?

My cousin, Pam, asked me yesterday if I could help spread the word. To which I responded, "About what?" Once I heard the story behind her request, there was no question in my mind that I want to help and I think you will, too.

Haven’t we all had those days where everything and anything that can go wrong does? When they occur, I have to remind myself that someone else always has it worse. Today, I learned of a family who currently does have it worse and I am on a mission to spread the word asking for nothing more than your thoughts and prayers.

Meet Kimmie Read Weber and her husband, Christopher. Both are active duty Army and stationed at Fort Stewart Georgia. Kimmie was diagnosed a little more than a year ago with Retroperitoneal Synovial Spindle Cell Sarcoma, a very rare, aggressive cancer. Here's a timeline to give you some background:

• November 2011 when they found a tumor in her chest, attached to her Vena Cava and forking her aorta. It was cutting off the blood supply to her heart by 80%.
• December 2011 she underwent two treatments of inpatient Chemotherapy consisting of Doxorubicin and Ifosfamide with Mesna.
• January 2012 her restaging scan showed no change in her tumor which had already grown to 4.9cm x 5cm. In January 2012 she went through surgery that had a 75% chance to kill her.
• March 2012 she started 33 treatments of radiation Monday thru Friday.
• June 2012 her first restaging scan after treatment showed NED (no evidence of disease) and they scheduled a restaging scan for every three months.
• September 2012 her scan came back with NED.
• November 2012 she had an unscheduled scan for recurrent chest pain and it also showed NED.
• January 2013 her scheduled scan showed her tumor had relapsed and measures 2.3cm x 3.3cm.
• January 15, 2013 her doctor told her and Christopher there was nothing more they could do for her there and they referred her to MD Anderson Cancer Center in Houston, Texas.
• February 7 Kimmie and Chris board a plane, ready to find answers and take action against this cancer.
• The tumor has grown to 4.2 x 3.4 cm. It hasn't attached itself to the vena cava yet or the diaphragm, but it is pretty close. It hasn’t spread anywhere else. Doctor is hopeful that aggressive chemo will stop it.

I will leave you to visit Prayers for Kimmie Read Weber on Facebook to read the day-by-day details since their arrival at MDACC.

Now for the rest of the story that brings to life the statement: “Someone else always has it worse.”

Kimmie’s cancer is not the only hardship and heartbreak the Weber family has endured of late. On May 13, 2011, Christopher lost his brother, Daniel Patrick Weber, to a motorcycle accident in El Paso Texas shortly after his discharge from the Army and a few months prior to Kimmie’s cancer diagnosis. Daniel served two tours of duty in Iraq, receiving a purple heart in June of 2007.

During Kimmie's radiation treatments in April 2012, Christopher lost his youngest, only remaining sibling, Thomas Howard Weber.  Tom was hit by a truck on his motorcycle and died instantly.  He was serving as a U.S. Navy Seabee -- his lifelong dream.

All three brothers served numerous tours, including Kuwait, Iraq and Afghanistan. You can see a video tribute to the brothers here.

I think you will agree that no one family should have to endure the pain and heartache that this family in less than two years. Nor should the parents have to bury two children in less than a year while watching a daughter fight for her life twice. Obviously, the Weber Family has many needs right now including physical, financial and spiritual. The one thing that all of us can help with right now is the later. Our thoughts and prayers are sure to a blessing and a wonderful sign of support.

• Take a minute to offer that now
• Then click here to Like their Facebook page and follow Kimmie’s journey
• And share this request on your Facebook page or E-mail a link to your contacts to help spread the word!

In addition to my prayers for Kimmie and her family, I pray all of us find a positive focus. I will:

• take a minute to be grateful
• let go of any negativity
• make a list of five things I am grateful for

In closing, let me ask you a question: I know you "can" help spread the word, but will you?

Monday, February 4, 2013

Another Joey Update...

Joey's mom wrote the following update on Joey's journey for all those who continue to ask about him and keep him (and the family) in their thoughts and prayers.

Dear Friends & Family, 


I wanted to take a minute to let you know that Joey's bone marrow biopsy did come back all clear.We all were so grateful to finally get the word. The results however from his last labs indicate that the GVHD is not improving as hoped now that the steroids have been lowered. This disease effects Joey's joints, liver, other organs, skin, lungs and so much more. It is very serious and can be fatal. While we feel so blessed that everything else looks good, things are still very difficult at our home because Joey does not have a day that he can fully enjoy. He does try, but the road has been long and his body has really been through so much. 

I came across a picture of Joey today from about three years ago when he was healthy and happy..a normal little boy having fun with his friends. It was painful for me to see, but I pulled it out and stuck it in my planner so I can see it every day now and visualize him that way again. 

Again I wish to thank you for including Joey in your prayers. For asking others to pray. For putting Joey on prayer lists and keeping him in your hearts. I know he will improve with our prayers. 

Thank you for remembering Joey's "new" birthday! Thank you Judy Holmes for making Joey that cozy U of M blanket! It is so warm. Thank you to those that send cards and mail. Thank you Ron and Nancy for the I Tunes card (you know his addiction to games on his iPad :) and to all his Aunts for all the wonderful & endless sweet things you all do to make Joey's life brighter. 

Tomorrow is another hospital day. He will have labs, a check up, a lung function test, an echo and all his immunizations. (since his him immune system was wiped out, they will need to give all immunizations again from birth on) So, it will be a long day for him. 

Much love, 

Lisa 

Tuesday, January 22, 2013

How's Joey Caretti doing?

God bless those who continue to ask about young Joey Caretti's progress and who have kept him in their thoughts and prayers.  Joey's Mom, Lisa, sent this update today.

Kids doing for other kids!  How cool!
Dear Friends & Family, 

The healing process from Joey's surgery was much longer than we were prepared for. We had expected that he would be sore, that the bone marrow biopsy would be painful, but had not thought about how long his port had been in and all the scar tissue that would have formed around it. That on top of his daily headaches and stomach issues was quite an ordeal. 

We have not heard back on the biopsy results yet, however Joey has several doctor visits coming up so I am sure we will get the results then. This Friday we return to the GVHD (Graph vs Host disease) specialist to see how things are going. Joey is slowly going back down on the steroids that helped get the symptoms under control. We are praying that his body finally will accept the transplant. GVHD can be chronic and even fatal, so we once again ask for your prayers that Joey can be free from this disease. He has been through so much. 

He is not in treatment of any kind, just handfuls of medication twice a day, and we are so very grateful to have him home with us. That we are not in the hospital. We celebrate everything. We had a port and line removal party! Joey will celebrate his new birthday (the date of his transplant) on February 1st and his real birthday on February 15th. Two birthdays in one month and one he will not have to share with his twin sister. We simply wish that he could feel better. As a parent, it is heartbreaking to see him suffer still every day, but I believe one day he will be able to enjoy life again to the fullest. 

Thank you to all of you that still send him cards, notes and drop off things for him here. (and for all of us.)You really brighten his day and I want you to know how much it means to all of us. We are so blessed. 

The toy drive was such a success! Check out the article about it here that shows how generous the school children were. I will send the link as soon as I find it. We also had a Girl Scout Troop drop off a large collection of gifts after Christmas for the hospital so we had another drop off! Thank you Girl Scouts!!! 

Joey started back up with his home school teacher twice a week, PT three times a week and Reiki once a week. He always finds the Reiki very relaxing and it helps him with pain. In fact, we have two wonderful Reiki practitioners that come to the house to work on Joey and he calls both of them "The Healing Ladies" So after two years of watching them I thought it might be time I took a class myself. 

As soon as Joey is ready, he will begin karate again at his former dojo. It will have to be private lessons for a while, since he is still on medications that lower his immune system and this is the worst year ever for the flu. I think this will be so good for him. 


Thank you all for keeping Joey on your prayer list. For asking others to do the same. The past year was pretty bad, I won't sugar coat that. But we made it. N ow we need just a little more prayer, all together, to push Joey over this rough spot so he can get back to his childhood. 

Much love, 
Lisa

Saturday, December 22, 2012

Asking about Joey? Here's an update...

Joey's mom shared an update this morning regarding surgery for the removal of his line and port.  Thank you for continuing to ask about his journey.  Your ongoing support, thoughts and most definitely your prayers continue to make a difference.  

May God grant each of you a blessed Christmas celebration!

Laura
 


Dear Friends & family, 

Just a brief note to let you know that Joey was not able to get his line out before Christmas as he had wished. We had been on standby...trying to plan a very busy week around the fact that one of the days would be a surgery day. I called a couple of times to get the time and date. Finally we were informed that it would not be until January 8th. 

I had asked about having his port removed at the same time. Keeping the port in is a risk for infection and is painful to flush so I really wanted them to take it out at the same time as the line. When I did hear back from the office, they agreed it could come out with the line. 

Joey was disappointed, having dreamed of this for so long. But I explained that this week is for children who need emergency surgery only, and that he understood. These things have a way I said of turning out for the best as you will be sore after having this done, this way you can enjoy the break with Maggie and Richard and your friends. 

He will be having his line out, his port out and a bone marrow biopsy at the same time, he will be more than sore. If they would have got him in this week as his doctor had promised, I do feel he would have missed yet another holiday. 

God really does know what is best. I have been spending some time reflecting on this past year, and I can see know how we were led in many paths to help heal Joey, yet at the time we saw them as obstacles or set backs. Perhaps this year we will learn to rely on faith instead of fear. 

Thank you for all your well wishes, good thoughts and most important prayers. We wish you a safe, healthy and very Merry Christmas. 

Love, 
Lisa