Mattie Miracle Walk 2023 was a $131,249 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

September 3, 2009

Thursday, September 3, 2009

Thursday, September 3, 2009

Tonight's Mattie creation is a ceiling tile that he painted in the Lombardi Clinic. Mattie's good buddy, Zachary, gave him a toy train that he brought back from England. Mattie loves this train, and decided to paint a picture of it to put on display. In fact if my memory recalls correctly, Mattie created this tile with his clinic buddy, Maya. This is one of several beautiful ceiling tiles Mattie has painted!

Quote of the day: "While we try to teach our children all about life, our children teach us what life is all about." ~ Angela Schwindt

Wednesday night was an absolute torture. Mattie fell asleep at around midnight, but by 1am, he couldn't get comfortable and was in a lot of pain. I never got any sleep last night and neither did Mattie. I was up and giving Mattie IV morphine every 15 minutes. He would have only about five minutes of pain relief, and then be screaming out in pain. As the morning wore on, I could tell Mattie was getting hotter to the touch, and by 6am, he felt like he was burning up. By this point, I went to wake Peter up and we then took his temperature. Mattie was running an 101 degree fever, and I proceeded to call the HEM/ONC doctor on call. I was VERY tired and very impatient. The doctor did not call me back right away, and so by 6:30am, I called Dr. Shad on her cell phone. Dr. Shad responded and told us to come right into the PICU. So at that point, Peter sat with Mattie, while I scrambled around the house getting ready and packing. Mind you I had just unpacked, since we got home on Wednesday night from the hospital. I was very unhappy and very frustrated, and felt sheer exhaustion.

Riding in the car to the hospital was painful. Every bump and motion made Mattie highly uncomfortable, and the level of tension in our car was so thick you could cut it with a knife. As we were wheeling Mattie toward the PICU, I ran ahead to try to get someone's attention. When I walked into the unit, I saw Debbi (our sedation nurse angel). I told Debbi we really needed Dilaudid, and within minutes, Katie and Christie (Mattie's wonderful HEM/ONC nurses) were delivering this potent pain killer to Mattie. Thankfully! It was only at that point did I see Mattie calm down and experience relief. It was almost like receiving a special gift, the crying and screaming stopped! I have heard so much crying this year, it almost has permanently drowned my ear drums!

We had a visit today from a surgical resident. When he walked in, he introduced himself and wanted to examine Mattie. I was highly confused by his visit, but he said he was asked to consult with us to rule out a bowel obstruction and to offer some suggestions for Mattie's intense bloating (since he said bloating can be a common side effect from surgeries and therefore his team may have some insights on how to deal with the bloating in general). Well I felt bad for this fellow, because between Peter and I we practically chewed his head off. I was confused by his visit because last night's gastroenterologist ensured me that Mattie did not have a bowel obstruction. He told us he wanted us to do a follow up x-ray today and also listened to Mattie's stomach with a stethoscope. Mattie however needs to be in control of the process. He holds the part of the stethoscope that touches his body, and moves it where the doctor tells him to. In fact, Mattie knows where many of his major organs are located in his body. Mattie is now being nicknamed the "little doctor."

Taking an x-ray of Mattie was downright painful to watch and hear. I let Peter take this project on, and I waited in the hallway. Mattie lands up writhing in pain and screaming, because his body is SO full of fluid. So when the tech tries to put the xray film behind him, it is excruciating! Today Mattie looks like a juicy tomato. His stomach is enormous, his face is swollen, and his legs are almost twice their size. The x-ray tech had her hands full with Mattie, but she was lucky enough to have Peter's assistance.

Jey, Mattie's "big brother" came up to visit me today and we were talking about what a special CT tech he has been for Mattie. However, you should know that many techs are not wild about Mattie. Mattie is perceived as difficult and some even are bold enough to think he is spoiled. I personally am offended by those who view Mattie as spoiled. Here is a boy who has been dealing with one of the most virulent forms of cancer, has survived three major surgeries, 11 months of chemotherapy, and a host of psychological consequences of cancer. It seems to me that such a patient deserves to be spoiled and pampered to some extent. It turns out though, as these same techs, have gotten to know Mattie they realize how wrong they have been about him. In fact, many of them now greatly respect Mattie for his forwardness, his ability to advocate for himself, and to get his needs met. Funny how these individuals have been transformed. As Jey rightfully said to me, it is just a matter of hospital employees remembering why they chose to work in a hospital, and to also make the effort to get to know their patients. So true!

Jey came to talk to me today about getting a fish for Mattie. I thank all of you who wrote me about pet fish ideas for Mattie. I told Jey that I would love for Mattie to be able to bring his pet fish into the PICU when he comes to stay over. I think Mattie would find watching the fish and trying to care for it very therapeutic. However, having live animals in the PICU is against hospital policies. I need to talk to Linda about pets and integrating them into Mattie's life here. Jey is a spiritual person, but like myself, is having a very hard time understanding and accepting God's plan for Mattie. It is actually hard to come to peace with this. Jey let me know that when Mattie dies, and my family no longer will be coming to Georgetown, that he plans to change careers. He said he will be unable to work here any longer, we have had that significant of an impact on his life. I was actually very, very touched by Jey's sincerity, commitment, and love for Mattie and my family. I told Jey that meeting Mattie was fate for him, since Mattie was diagnosed with cancer on his father's birthday, July 23.

Peter summed up Mattie's issues to a T today. Mattie is contending with three forms of pain, and somehow it is our responsibility to be able to treat each form so that we can effectively provide some relief to Mattie. The three forms of pain are: 1) anxiety, 2) the cancer itself, and 3) constipation and fluid retention. Naturally these three forms of pain require different treatments, and up until today, we were just throwing pain medications at all the issues, which clearly was ineffective.

To address the pain from the cancer, the HEM/ONC team consulted with Dr. Spivak. Dr. Spivak is the head of pain management at Georgetown Hospital, and he helped us during Mattie's sternotomy in June. Dr. Spivak felt that Morphine was no longer effective for Mattie, and ordered an IV drip of Dilaudid. In addition, we will be increasing the concentration of the fentanyl patch on Mattie's back. My concern however continues to be over medicating Mattie. But Dr. Spivak assured me as the pain subsides from constipation or fluid retention, we can taper down the medications if need be.

We also consulted with Dr. Biel today. Dr. Biel is Mattie's psychiatrist. We discussed Mattie's intense level of anxiety. The littlest things set Mattie off. He is sensitive to touch, and Peter and I can no longer hug or hold Mattie. This is a very counter intuitive feeling, because when your child hurts, you want to hold them. In addition, Mattie is afraid of the infusion of most medications, of doctors and nurses examining him, and the list goes on. He is also extremely frightened of perceived pain. He fears the start of pain and the inability to have relief from it. It is actually a horrendous sight to see your child so anxious. In any case, Dr. Biel prescribed a higher dosage of IV valium for Mattie today and we are giving it to him every two hours. Though Mattie has spent the majority of the day in and out of sleep, we feel this is actually the most humane way to treat him right now, until we get his pain under control. However, now at 11pm, Mattie is up and highly agitated. Somehow the nights are always the WORST for us.

As for the constipation and fluid retention, this is actually more complicated to manage. To handle the constipation, Mattie had to receive Methylnaltraxone today through his leg catheter. We selected the catheter because we thought Mattie would prefer this method to the actual insertion of a needle in his leg. None the less, Mattie put up quite a fight today, and refused to have his leg catheter accessed. Peter and I tried talking with him, rationalizing with him about the importance of the medication, and also trying to normalize his fears. NOTHING worked. So we even attempted giving him a dose of Dilaudid and Valium before attempting to insert the needle into the catheter. But basically nothing we gave Mattie relieved his anxiety over this procedure. When Dr. Biel spoke to Mattie today, he asked him if Mattie was scared or frightened of anything. Mattie answer, "yes." However, the only thing he claims to be frightened of was getting medicine through the leg catheter. As the day wore on, I realized he needed to receive this medication and we couldn't hold it off any longer. So Peter and I played good cop, bad cop. Mattie got frustrated with Peter and threw him out of the room, which was the perfect opportunity for me to work with Mattie and play good cop and get him to comply. Meanwhile, Katie and Christie, Mattie's nurses, were patient and stayed with us throughout this entire ordeal. Mattie did allow Katie to give him the methylnaltraxone through the catheter, but I really wonder how we are supposed to do this every other day at home?! One thing became very evident to me from this experience. Mattie and I most definitely have a special connection. Not just because we are mother and son. Mattie and I think a like, we have similar personalities, and react to things similarly. Under times of stress and chaos, this is actually a blessing, because I know exactly how Mattie is feeling or perceiving things. Mattie and I have survived many things together as he was growing up. His toddler years were far from easy, but we grew together and always respected each other. It is through this respect, which was earned, that I can rationalize with Mattie and most times he will comply with what I am asking him to do. This is a powerful trust and gift to be given.

The xray today was very revealing. In fact, the intestines couldn't be seen in the xray, because the main culprit in the film was fluid. Mattie's body is completely filled with fluid. Where did the fluid come from? Well there are a lot of theories, but the main one is due to Mattie's lack of nutrition. Mattie is unable to take in protein and produce albumin, which is the most abundant blood plasma protein produced in the liver. Albumin is a vital protein that prevents the intestines and blood vessels from leaking fluid into the body cavity. Since Mattie's albumin level is low, fluid is literally leaking from his vessels and accumulating in his body. In fact, if you saw Mattie's body it is almost unrecognizable. He is so swollen, he looks like a round mass rather than a seven year old child. So today, Mattie was given an infusion of albumin, which will hopefully pull the fluids back into his vessels. He was also prescribed Lasix, which is a diuretic, used to flush excess fluids in the body. I am told that it will take almost 72 hours to get Mattie's fluids under control. So we will be here through the weekend. Another holiday spent in the hospital, what a surprise, but we really don't even care any more!


In addition to everything else, Mattie is also on antibiotics for his fever, so right now his body is on overload, and you really have to appreciate what a trooper he is. He is in intense pain, yet for the most part tried to handle it himself, until it became unbearable!

We would like to thank Tamra again for another wonderful lunch. Thank you so much for supporting us during our days in the hospital. It means a great deal to us, and I have appreciated all the fresh vegetables and fruits. As you know I also love the plates and silverware that you bring me. It makes me feel as if I came over and visited with you! Thank you for also supporting my parents and taking them to lunch today! I realize Mattie's illness impacts his grandparents, but Peter and I are too emotionally wiped out to process things for ourselves much less with family members. So I appreciate friends who are willing to support my entire family.

This evening I had the opportunity to talk with Dr. Snyder, Mattie's oncologist. Dr. Snyder is working with a palliative care physician who will be consulting with us on Mattie's case. I welcome this input, because this is what this physician does. He helps people die with dignity and deal with end of life pain. Hopefully we will meet this person next week. Dr. Snyder and I talked about religion and spirituality, since we are both Catholic. She understood how I could feel upset with God, and question why this is happening to my Mattie. It was refreshing to have this dialogue, since typically I am flooded with comments such as this is "God's plan," "Mattie is being called home," "he has a higher calling," and "he has had seven good years." Though all of this may be true, I am not in the place to hear it or accept it now. If you think I am being disrespectful to a higher power, that is not my intention, but I ask you to put yourself in my position, and honesty examine how you feel.

We would like to thank Emily G. for a wonderful dinner. Emily thanks for the support and your generosity! It is greatly appreciated.

Mattie received a gift from Jenny (one of his art therapists) today. She brought him a remote control lochness monster. Even in his tired state, he perked up with this box. Later in the day Linda came by and provided us with a tub of water for Nessy to swim in. Mattie did not have much energy, but he did watch for a few minutes. Definitely not the playful boy we all once knew and loved.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am sorry you got what we used to refer to as the "run around" at the hospital on Wednesday. Fortunately, you and Peter are determined and got the information that you needed to make decisions for Mattie. I am grateful that you had the will to ensure you spoke to the right person (Dr Pluta) about Mattie's condition. It takes much more of that stuff (Golytely) than one would think to have the required effects. Although I am sorry you ended up spending Tuesday night at the hospital, I am glad you were surrounded by caring staff like Tricia and others and that you allowed them to help care for you as well as Mattie. I hope Wednesday night at home was calm, that Mattie's system is now functioning again and that his pain medications are doing the job. So today I give you the prayer we recite in the mornings for the functioning of our bodies.





Prayer for the body Blessed are You, our Eternal God, Creator of the Universe, who has made our bodies in wisdom, creating openings, arteries, glands, and organs marvelous in structure, intricate in design. Should but one of them, by being blocked or opened, fail to function, it would be difficult to stand before You. Wondrous Fashioner and Sustainer of life, Source of our health and our strength, we give you thanks and praise."

5 comments:

maryannrapp said...

hey vicki,

you are in my thoughts and prayers with you - sorry I haven't been in more frequent touch with you - just got my computer fixed - was
broken for 3 months and missing many keys, so I couldn't type coherently.

I think the bloating and watermelon
stomach may be related to the liver cancer - I've had patients of mine with end stage liver disease and they have stomachs that look like African pygmies - think the term is ascites.. You might ask the docs about that.

I will send you an email soon.I had Diluadid for my gastric bypass since I don't tolerate Morphine. I was on it 2 and a half days on the pump, but it gave me migraines. It's strong stuff but believe me when the pain of having my abdomen opened up wore off from the Diluadid, it was searing pain. I can only imagine what internal pain is like. God bless Mattie. He is giving a good fight.

Are there any Veggie tales he hasn't seen? I saw a few episodes in the store over the weekend, but wanted to know which ones he has seen.

Love and hugs,
Mary Ann
maryrapp@aol.com

maryannrapp said...

Vicki,

One other thing about the God issue and I share this from experience - it's okay. You are expected to be "the perfect Cathoic" and rationalize it away.

I know this, I know this, I know this - deeply. There's a wonderful small book, I think I may still have it called "May I Hate God" - it totally approves of being angry at God. If I have it, I will send it to you. It's just like 30 pages, but it's a classic. It's out of print, I think.

Love,

Mary Ann

maryannrapp said...

One more thing-Oops! Meant to say you AREN'T expected to be the perfect Catholic, to pretend that it's his time, that God called Him at this time, etc. I like Harold Kueschner's philosophy - Bad things DO happen to good people.

I just found out about 3 weeks ago that my aunt in Norfolk who was recuperating from colon cancer about successful treatment "suddenly" had metastized
liver cancer and is on pallative chemo for 2 months just so she can have 1 year, perhaps. I shared with my cousin about the "mysterious" stomach pain that Mattie was having since May, and she said that was the 1st q. that the oncologist said to her, "haven't you felt anything in your stomach?" - w/o tx she would have 6 months, this tx gives 1-2 years max, assuming continous chemo.

I hate cancer too Vicki. This particular kind that Mattie has is insidious. It is horrible. God, I feel for you. My mom is devastated and has also said she would gladly trade her life for Mattie's. She's going to be 87 in a few weeks. Right now, life isn't fair. We don't know why, but 1 thing is clear - Mattie is definitely touching lives - near and afar. Even Jey had that "divine appointment" with Mattie - crossing paths.

Love you lots,
Mary Ann

Anonymous said...

Hi, Vicki!

I am so sorry Mattie is struggling so much with pain and bloating.

I am not a big NG tube fan. Emma hated hers; however, in certain circumstances the advantages outway the disadvantages and I'm wondering if you might want to reconsider discussing this with your team. The thing is TPN has risks and as you have seen, things can go wrong when someone isn't eating at all. If MAttie had an NG tube, he could be given nutrition very slowly (you could set the rate at the same one babies get initially) which sometimes the stomach will take when it won't take regular food. Also, while Mattie is sleeping the "anxiety" factor might not be an issue and this may allow him to keep down food he would throw up if the anxiety factor was added into the equation. If Mattie kept food down being given it very slowly, you could up the speed. THe NG tube can be easily accessed when a child is sleeping, so you can give oral meds through it without waking the child. Also, you could elect to feed Mattie only when he was sleeping. This would elliminate the need for him to be hooked up to another machine while awake. You can easily connect and start the NG feeds without waking the child as long as they are not sleeping on top of their tube. As I said, I really hated the NG tube most of the time but there was a point in Emma's treatment where it really was helpful. She had to take flagyl (which tastes like poison) because of recurrant cdiff and I don't know if we could have done that if she'd had to swallow that horrible stuff. Also, being able to give her oral meds while she slept was a real blessing at one point.

The tube takes several days to get used to, but after that it probably wouldn't bother Mattie at all. The pump can be a real pain because it seems to alarm for no good reason just after you finally fall asleep but it sounds like you don't sleep much anyhow.

Food for thought,

Lauren

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