Quotes of the day - About a Mother's love. Thank you Charlie!
A mother's love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path. Agatha Christie
When you are a mother, you are never really alone in your thoughts. A mother always has to think twice, once for herself and once for her child. Sophia Loren
Mattie had a better night of sleep on tuesday. However, he did wake up at 3:30am in pain. You would have been very proud of Mattie. He quickly learned how to push the button of the PCA which administers Fentenol (a narcotic). Mattie continues to be a real trooper. He woke up this morning and was a bit upset with the fact that his left arm hurt him. His left arm had two IVs in it and the IVs were bothering Mattie, and in essence he couldn't use either arm since monday. This was very frustrating for Mattie. Mattie needed a distraction, and fortunately we received a package from Melissa Spriggs (a GW graduate who I have had the pleasure of becoming friends with). Melissa, your glow in the dark dino puzzle saved the day this morning. However, while doing the puzzle, Mattie got frustrated because he couldn't move his arms. He was trying to describe which pieces he wanted me to move for him, but at times I wasn't moving fast enough or misunderstood which piece he wanted. This caused him to become very upset. Upset because I think he realized he couldn't function the way he wanted to. But we plugged through it and then opened up the other wonderful halloween gifts Melissa sent Mattie. The halloween flashlight was a hit. Thanks Melissa!
My parents came in today to watch Mattie, while Peter and I sat outside for an hour to eat lunch. Thank you for that time away! Thank you Ellen for bringing lunch for Peter and I and for uploading more books on tape to Mattie's computer. During Ellen's visit, she heard me ranting and raving about a couple of things that were stressing me out. These things did not relate to Mattie's situation, but more about personality conflicts and my frustration with the observation that the medical profession can have incredible egos and temperaments which I find so unnerving. Under normal circumstances I could put these turfdom issues into perspective, but all bets are off, when you are sleep deprived and your son is very sick with cancer. I do admit I can be more explosive and more emotional, however, the fact that I am holding it together at all, merits some kind of gold star. Ellen listened to me and empathetized, but then she went out on a limb and told me she was worried about me. That all this stress isn't good for me, and that it is counterproductive and ultimately won't help Mattie. I let that sink in for a bit. Because when you are angry about something, it is sometimes difficult to think rationally. But while having lunch with Peter, I reflected on what Ellen said to me. I realized that what she was saying was accurate. I can advocate for Mattie, but I can't change a system overnight. Absolutely! So I gave myself permission to let these things go. Thanks Ellen, I am sure it wasn't easy for you to say this to me.
Mattie had the wonderful opportunity to play with "the ladies" today. Though we truly value the medical and nursing care Mattie is getting at Georgetown, we would be lost without the adjunct services such as art therapy and child life. Mattie responds to these professionals, and they can motivate him in ways that I can't. I could feel inadequate by the fact that Mattie is so eager to play and be with these women, but I don't. I don't, because I realize I can't be everything to Mattie, and I also welcome these social interactions for Mattie. Each of these women bring a new perspective and skill to the situation which is so needed and welcomed. I find that they are very motivated to find ways to stimulate Mattie, and they are getting ready with ideas to help Mattie as he becomes more incapacitated with the second surgery that is scheduled.
At 3pm today, Linda was in Mattie's room helping Mattie's nurse prepare him for his physical therapist visit with Anna. Anna came to Mattie's room to help us learn to transfer him from the bed to a wheelchair. Mattie was motivated to get up, because guess where he was going? That's right, to the childlife playroom! You should have seen the entourage it took to move Mattie. Peter was pushing the wheelchair, and Anna, Jenny, Linda, and myself were carrying tubes, monitors, and a blood drain. It was a sight. Anna was super helpful and is trying to find a way to build a rapport with Mattie so they can begin therapy soon. Anna is coming back on thursday to follow up with Mattie. While in the childlife playroom, Mattie started to blow bubbles. This was a great activity for him, because all this blowing helped to clear out his lungs. There is NO coughing and congestion tonight. Below you will see some great photos from today.
Whitney, Mattie, Lesley, Jenny, and Linda blowing bubbles!
Whitney, Mattie, and Jenny filling the room with bubbles!
Lesley and Whitney found a bubble maker, and along with Mattie's bubbles created an enormous bubble mountain. Mattie was fascinated with the bubbles as were we!
In the midst of our playroom time, Mattie was visited by Erin (one of favorite Hem/Onc nurses). Erin came in to say hi, and it is so lovely to see how much the Hem/Onc nurses really care about Mattie. Though Mattie is in the hospital this week, he is not being cared for by his typical Hem/Onc team, instead because he has had surgery he falls under the domain of the PICU staff. None the less, the Hem/Onc nurses check in on us, talk with Mattie, and I appreciate their deep caring and concern for us. I truly believe nursing is second nature to them, and not just a job.
After about an hour in the playroom, Mattie started to get tired and his heart rate began to increase. We wheeled him back to his room and in order to get him back into bed, he needed more pain medication. After he got back into bed, we had a visit from Dr. Bob Henshaw. We discussed some things with Bob, and Bob's plan is to change Mattie's arm dressing tomorrow or friday. I personally continue to be in awe of what Bob accomplished on monday. It is funny that he saves lives by day and yet by night is a dedicated dad who like the rest of us goes to soccer games, helps with homework, and so forth.
After Bob left tonight, we had a visit from our favorite volunteers, Jerry and Nancy. If you recall Jerry gave Mattie an electric keyboard last week. It is always a pleasure to see them, and to chat about life and music. While I was chatting with them, I had the pleasure of hanging up Mattie's "helping hands" on his room door. These hands are precious. Basically Mattie's friends from RCC, SSSAS, and around the country, cut out a paper hand and decorated it for Mattie. The hands are laminated and joined together with clips. They are works of art and a labor of love. Below you will see a picture I took of the hands. Everyone on the floor is commenting about them! Thank you for the hands, the symbolism is touching, and they add a lot of color and love to our hospital world.
"Helping Hands" on the door!
I want to acknowledge Ann, Abigail, Katie, and Michael Henshaw for hosting a flower sale to raise money for Mattie. It is so special when children initiate such actitivies for their friend. Below you will see a picture of the kids after the sale was over! Thank you.
Thank you Eva K. for dinner tonight. We loved it and appreciate you thinking of us!
I would like to share four e-mails with you tonight. One is from my friend Susan S. Susan can always find a way to make me laugh. I think you will see why after reading what she wrote to me. The subject title of the e-mail was "in need of therapy." Susan wrote, "OK I have to admit. I have a bad case of Mattie-itis. I am addicted to your blog. Ever since you spoiled us Monday & part of Tuesday with periodic updates I must check your blog at least 25 times a day!!! While it is bad for a therapist to have an addiction...at least it's non-life threatening."
The second e-mail comes from CR. CR is one of Mattie's Hem/Onc nurses who we have had the pleasure of working with. CR sent me this on the day of Mattie's surgery. CR wrote, "Even though I am not at work today, my heart and mind have certainly been there. I woke up and my initial thought for the day was of Mattie and his surgery. My mom and I went to Mass this morning (at 9 am, right about when I thought surgery might have been starting. . .) to pray for a successful day and speedy healing. While I have only worked with Mattie a couple of times, it is easy to see how close nit and loving your family is and I honestly wish each and every one of our patients had parents who are as involved, knowledgeable, and proactive as you both are. Mattie is a very special guy."
The third e-mail is from my TA, Carrie. Carrie wrote, "I am in awe and my mother and I were discussing this just last night at how mature (emotionally) Mattie is...he is such a mature 6 year old. I mean it is unbelievable the statements he makes that are so on the mark!..Your blog has set my mother into a plethora of very real memories when she had to go through a lesser degree of surgeries but surgeries none the less with my brother when he was Mattie's age. She remarked that my brother who is a very very smart man, a fullbright scholar (two times), was not this mature and expressive when he was going through his painful surgeries. She remembers feeling a lot of what you are describing in dealing with the system...She even mentioned they almost killed my brother when they almost gave him the wrong dose of pain meds. So your openness and love are reaching and impacting many people and not just in their current lives but going back decades! Thank you Vicki and give Mattie my love!"
On the electronic front, we want to thank Brian Boru, Nancy M. (a parent of an osteosarcoma survivor), Uncle Dave and Aunt Cheryl, Joy, Wayne H., Mirela and Lori, Jenny and Claire C., Jacky, and Cecile and Lily P. for all your wonderful and supportive e-mails. Thank you Karen and Margaret for your great e-cards!
As many of you know Ann is our Team Mattie coordinator. Ann has and continues to be with us through every step of Mattie's cancer journey, but this week, it was a hard week, because Ann's husband was the person performing surgery on Mattie. Usually I am two steps ahead on how someone is feeling, but now a days, I am so innundated with my own emotions that I am not too perceptive. Meaning that I never thought about how awkward this week could be for Ann. Awkward because Dr. Bob Henshaw (Mattie's surgeon) is her husband. I have great respect for Ann and what she can accomplish and even more admiration that she stepped aside this week, while Bob was working his medical magic and did not want to complicate an already complicated situation. As you know moms, friendships, and emotions can be volatile. None the less, I sent Ann an e-mail last night because even though I am not physically seeing her this week, I know she is working behind the scenes and has us in her constant thoughts. Using the line from the movie Casablanca, I told her that she and I have the making of a beautiful friendship. Ann responded to my e-mail by saying we would be, "Friends forever, battling cancer and looking for cures for the rest of our lives!" Though there is an incredible amount of pain and torture on this cancer journey, it has opened my eyes to the beauty, love, and friendship that surrounds me.
I end tonight with a beautiful quote that CR, one of Mattie's nurses, sent me. It comes from another fine lady, Audrey Hepburn. "For attractive lips, speak words of kindness. For lovely eyes, seek out the good in people. For a slim figure, share your food with the hungry. For beautiful hair, let a child run his/her fingers through it once a day. For poise, walk with the knowledge that you never walk alone. People, even more than things, have to be restored, renewed, revived, reclaimed, and redeemed; never throw out anyone. Remember, if you ever need a helping hand, you will find one at the end of each of your arms. As you grow older, you will discover that you have two hands; One for helping yourself, and the other for helping others."
Goodnight, God bless, thank you for your support, and I appreciate the bake sale that is being planned on Mattie's behalf this Saturday at Episcopal High School!
3 comments:
Hi, Folks!
I'm so glad that Mattie's pain is better controlled. It should just get better from here on out.
Emma has developmental apraxia (a neurological condition that effects her ability to perform voluntary movements with her mouth and hands) and so she has some "hand issues" and has OT and PT to help with these. I don't know how much the arm surgeries will ultimately effect Mattie's function, but I have a good idea of how the leg surgery might since Emma had a distal right tumor removed as well. You might want to discuss the following with your OT. If you don't have an OT, I'd ask for one-they're very helpful with this sort of thing.
1. Clothing-snaps, zippers, etc.., are very hard for EMma to manage because of the apraxia but dressing yourself is an important thing for a 6 year old's self esteem so we buy everything for her with ease in mind-elastic wastes, roomy colars so she can easily get things over her head, etc..,-you might ask the OT to give you some idea about whether or not Mattie will need these sorts of things and start shopping for him accordingly.
2. A Touch Screen for the computer- A touch screen is a special thing for the computer that allows you to just touch what you want to activate so that you don't need to use keys or mouse-with it Emma can operate a lot on the computer itself, without it because of her difficulties with moving the mouse and keys, she needs lots of help. You also get special keyboards with bigger keys or programable keys or whatever that may be options too depending on Mattie's needs. You might want to consider asking the OT about these sorts of things. You can also request an adaptive technology evaluation through OT and often your insurance will at least pay for the evaluation if not for the actual device. The OT should know about this sort of thing.
3. You may want to talk to the hospital's education coordinator about whether or not she feels it will be beneficial/worth the trouble to refer Mattie to the school district for special education services (he'll qualify for OT and PT) mainly because it may be possible to get them to provide the touch screen, etc.., Dealing with the school district can be a royal pain, but it may be worth it long term-the hospital teacher/education staff may be able to give you some insight into this knowing what your school district is like. Emma got in home services during her recovery from an OT once a week, a touch screen and some other special devices to use all from the school district. Now Emma has other issues besides osteo and every state is different, but it doesn't hurt to ask if the school district may have something to offer Mattie.
4. One thing I wish I had known about pre leg surgery was the possibility of osteoporosis (the same thing old people get) occuring. Emma had some complications for her leg and so was not weight bearing for long periods of time. This weakened her bones and led to osteoporosis which caused her to get stress fractures all the time which led to less weight bearing and more fractures, etc..., Finally she broke the cycle and now doesn't have stress fractures any more, but it would have been nice to avoid all this. It strikes me that since Mattie may have difficulty using a walker or crutches (you might ask about this), he may have trouble with this since there is a period of time when the child is allowed to be partially weight bearing and must use these things to move around. If Mattie can't do this, you'll want to know what their plan is for keeping up his bone density through exercises, whatever.
4.Bike and swim issues-Emma isn't allowed to jump or run limiting the activities she can participate in but swimming and biking are both good function building activities that she can do. Mattie won't be able to swim until after the central line is removed, but once it is, this is a great activity and you can get PT done in a therapy pool-Emma loved this and it was a factor in helping her build bone strength because they PT used pool weights to do this more safely than on land activities could have. Initially Emma used an adaptive trike in the hospital to build up bone strength. Now we are planning on getting her a three wheeled juvenile trike since we can't take the chance of her falling on a 2 wheeler. Some older children are able to ride their 2 wheelers with some adaptations.
Since Mattie really likes art, you might want to discuss special scissors and the like with the OT if Mattie is going to need them.
I know these issue are probably not uppermost in your mind and you have other things to think about now, but it doesn't hurt to think about how you will address them in the future.
One other thing that comes to mind is that you might want to make an Amazon gift wish list for Mattie. it's really hard for akid to get a gift and have the excitement of opening it to find that it isn't appropriate or that he can't operate it or whatever. We had this happen with Emma because her issues make many toys appropriate for other 6 year olds not that great for her. People wanted to send her things that she would enjoy but didn't know what that would be and the wish list gave them some idea. Things that worked for Emma that might work for Mattie would be rubber stamps, do a dot art, moon sand (messy but fun)magnetic building things because legos and Knex take too much hand strength and thick wooden rather than thin cardboard puzzles (Melissa and Dough make 50 piece wooden puzzles). You might also look into things like a Fisher Price kid's tough digital camera (doesn't break when dropped) and some electronic books, etc..
Sorry to be so long winded,
Lauren
Dear Mattie,
Grammie was impressed with the picture of the mountain of bubbles that you made with Leslie and Whitney, two of the remarkable "ladies" that surround you every day. You always had a way with bubble-making from your earliest days at Gymboree class when you were not even a year old. One of the highlights of Gymboree was the bubble-making event that took place towards the end of each class. You smiled a lot and got right into the activity. On one occasion the instructor prompted the class to repeat the word "bubble" after she said it. You were the only one who repeated the word "bubble" loud and clear. Everyone stopped and smiled. It was one of your first spoken words. It is a moment in time Mommy and I will always remember. From the pictures on the blog, it's plain to see you still have fun making bubbles and yesterday you used your imagination to create a wonderful shining bubble mountain for all to appreciate and enjoy. Keep up the good work! God Bless You, Grammie
Hi Mattie
I am SO PROUD of how you are helping to care for yourself and get down to the playroom. Your bubbles are awesome!
Bunny in Indianapolis
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