Saturday, May 30, 2009

Saturday, May 30, 2009

Quote of the day: "The most important things in life aren't things." ~ Anthony D'Angelo
Hi everyone, it is Pete writing tonight's blog. Since I spent most of the day with Mattie starting Friday night, I am writing today to give Vicki a break. As yesterday's post indicated, I arrived at the Hospital Friday afternoon and met up with Vicki. After cajoling, arguing, and finally raising my voice, I eventually got Vicki moving to go home. She left around 6pm in the middle of a downpour, but I was happy she was heading home.

Mattie started experiencing more pain and was receiving some morphine when I suggested a deal. I had secured some new Legos (I know, shocker) and proposed to Mattie that if he took his two vitamin supplements tonight, then he could get a new (and awesome) Lego. Prior to Osteosarcoma, we didn't need to cut as many deals, but given the last 11 months of this horrible existence, we have to settle for getting results versus fixating on how the results are achieved.

Mattie and I began on a 1,600 piece Lego at 630pm, and we did not stop until 2:30am. Yes, that makes eight hours of Legoing. The outcome was a large semi truck (Big rig as Mattie calls it) car transporter along with two sports cars to ride in the transporter. Mattie was very proud of things and we just moved slowly and at his pace. Most times he wanted to fit the pieces and during the ones that were particularly hard to fit, I tried supporting Mattie verbally and focused on him feeling better about his abilities as well as having some confidence, pride and independence in what he was accomplishing. I really do think that Legos are a form of therapy for Mattie that he and I share. If anyone has ever played with Legos the toy is both a physical as well as a creative/intellectual experience. Snapping the pieces together helps strengthen Mattie's hands and arms and the the process of creating something is both stimulating as well as confidence building.

Left: Mattie with his car transporter

So, once we completed the Lego at 2:30am, Mattie reached over to the Call Button and hailed his nurse, Sarah Marshall, to come to the room. He wanted to show off his accomplishment, and I was all for this. Sarah Marshall was her usual sweet self, and "Ooo'd and Ahh'd" all over his truck. Mattie soaked it up like a dry sponge, which only encouraged his willingness to promote his new set-up. So, he dispatched Sarah Marshall to get all the PICU nurses to come to his room. So sure enough, at 3:00am in the morning, I had a room full of attentive nurses. Anyway, Mattie was the center of attention, and if any of you know Mattie, you know that he is in his element when this occurs. So, by the time we cleared the room (mind you there was standing room only), it was 3:30am and time for bed. I think Mattie was ready to power-off, so the transition to bed was fairly smooth.

It was a quiet night except for Mattie going to the bathroom every few hours (and of course me sleeping with one ear and one eye open for him) and the sun lighting up the room at 5:45am. I was absolutely exhausted. Between working 65+ hours during the week, going to the hospital each night to entertain, and then racing home only to get up at 5:30am the next morning to begin the vicious cycle all over again, I was spent and collapsed. I know I am not a prisoner in the PICU day-in and day-out like Vicki, but I share a special kind of challenge and fatigue trying to balance being functional and productive at work, and then reverting to being a supportive dad/husband of a child with cancer at night and on the weekends, and in the case of today, covering Mattie solely. It's just too much, and although it is not the stress that Vicki endures, it is needless to say debilitating, demoralizing, and detrimental. Like Vicki, I have very little left to give, and I am not sure where the strength comes from to go on each day.

It was a slow morning and I was only woken up a half-dozen times starting first at 8am by the resident asking me questions about Mattie's need for a platelet transfusion today, and then again at 8:10 by the cleaning service people, who didn't knock but just barged in and started wrestling with the trash cans and bags, making enough noise to incite a riot. Then is was the food service people who knocked frantically to deliver a tray of food that Mattie would never and will never eat. And the list goes on and on.

Around noon time, I woke up Mattie determined to both make him go to the bathroom and get his pre-meds on-board so we could get the platelet transfusion going. In retrospect I am not sure why I was pushing the timeline since Vicki had to both go attend a graduation party (that she very much wanted to attend), and had to go to lunch with her parents.

So upon waking Mattie up, in his stupor, he spotted another Lego I had gotten for him and he was instantly motivated. The afternoon consisted of pre-medications for his transfusions as well as bouts of fatigue. We got through each while turning towards the 1,000 plus piece lego and the building of this masterpiece. Mattie was basically ready for discharge around 3pm, but we spent the rest of the time waiting for the pick-up, building, talking about silly things and laughing a lot about the TV characters we were watching as well as silly things that have occurred in our lives.

So let me close and pass the post over to Vicki who wants to add her items to the posting.

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Tonight is Peter's posting, but I did want to include this one paragraph about my day! While Peter was at the hospital with Mattie, I went out to lunch with my parents. Later in the afternoon we headed to Ellen's (Charlotte's mom) house. Ellen's son, Tyler (who many of you may recall did a lot of fundraising activities for Mattie) graduated from high school, and we were thrilled to be included in today's celebration. Ellen and Jeff planned a beautiful party on their outdoor deck. It was a lovely spring day, and we had a great time mingling and chatting with Ellen's family and friends. It is funny how through Mattie's illness, people just seem to know who I am. I had the opportunity to talk with many SSSAS parents, and finally got to meet a SSSAS parent, Kathryn, who I have only chatted with through e-mail. It was nice to meet her personally to thank her for her support. Many of Ellen's neighbors are also SSSAS parents, and they are also major supporters of Mattie and my family. I can't thank them for all they have done for us this year, and I so appreciated their lovely feedback about the blog. I was having a very good time at the party, until I saw the children running around with each other and playing. You need to understand that this particular group of children were Mattie's closest kindergarten buddies, and as I was watching them playing, I felt that someone special was missing from this mix, Mattie! A deep sadness came over me, and ironically the same sadness came over Ellen at the same time. I started crying, but pulled myself together, because this was a happy day and it wasn't my intention to put a damper on it. As chemo has come to an end, I have much more time to see the aftermath of Mattie's treatment on our life. In particularly I clearly see just how disabled Mattie is and how he clearly can't play with his friends like he used to. Something else to adjust to, along with a host of so many issues. All of which need to take a number.

I would like to end tonight's posting with a message from Charlie. Charlie wrote, "I don't know how you manage to go on with virtually no sleep. Up all night with a child in pain is not something the bravest of us would want to face. I am glad you managed to sort out that Mattie's pain is physically driven rather than psychological (not that psychological pain is any less real to the sufferer) but in the long run I believe it is easier to deal with physically created pain. There is then no push from the medical staff to "adjust one's attitude and get over it" as I have often heard. The key is finding the right level of relief, a balance that is hard to strike. I loved the silkscreen artwork; it is so much you to take a simple (green) line and turn it into a whole, complete scene just as you do as an instructor, a mental health therapist and a mom. Truly a skill to be envied. Since you are "off" full time hospital duty for two days, please don't get overwhelmed with chores and get some much needed rest!"

Friday, May 29, 2009

Friday, May 29, 2009

Quote of the day: My friend Charlie wrote to me and said, "this quote is dedicated to Ann H. and the other wonderful Mattie volunteers and hospital staff."
"Success has nothing to do with what you accomplish in life or accomplish for yourself. It’s what you do for others." ~ Danny Thomas

Mattie and I were very busy on Thursday night. One of the projects we created were silk screens with markers. Jessie (one of Mattie's art therapists) brought us a basket of art supplies from the clinic. So last night we got creative. Mattie started a silk screen, but then wasn't happy with it, so he gave it to me, and wanted me to do something with it. When Mattie handed the screen to me, all that was on it was a green line. To me the green line looked like a snake and I tried to transform the screen into a desert scene with Mattie's green snake in the center. Mattie and I chatted about the desert, and he was very engaged in his own creation.

Left: The silk screen Mattie started, featuring a green snake in the center and his cactus.

Right: This is the silk screen Mattie created for me. He entitled it, "Waterfall of Love." The big red object on the left is the waterfall, and on the right is a heart with the word, "mom" in the middle.

Thursday night was simply ENDLESS. To cut to the chase Mattie never went to bed until 5:30am. I shut the lights off at around 1:30am. However, Mattie started feeling pain. Pain all over. It was almost like every bone and muscle hurt. Which of course is frightening to me, since Mattie has Bone Cancer. I have been concerned with the amount of Morphine that Mattie has been taking, so last night when Mattie complained of pain, instead of getting his usual 1mg of Morphine, this time he received 0.5 mg. However, Mattie wasn't aware of this dosage decrease. What I began to see is that the 0.5mg amount accomplished nothing. Mattie continued to have pain and to whine. The whining lasted for hours. About an hour after Mattie received the 0.5mg dosage, Mattie's nurse gave him another 0.5 mg amount of Morphine because he couldn't take the pain. I was hoping this second amount would help Mattie, but it did not. Literally my head was pounding from hearing Mattie complain about pain from 1:30am to 5:30am. At around 5am, I couldn't take it anymore, and I asked Laura (Mattie's great HEM/ONC nurse) to come back in. At that point to told Laura that the 0.5mg dosage didn't help reduce Mattie's pain and he needed the 1mg level of Morphine. Laura had to ask the resident if this was okay to receive because he basically had been given Morphine back to back all night. Thankfully the resident allowed Mattie to have Morphine at 5am, otherwise none of us would have gotten any sleep. What I learned from this is Mattie has very legitimate pain. He did not know we lowered the concentration of the Morphine last night, he thought he was getting his usual medication. But the lower dosage did not work. That was very telling to me.

At 5am, when Laura was giving Mattie IV Morphine, Mattie was talking and asking Laura questions. The topic of conversation was our middle names. Where Mattie found the energy to have such a conversation is beyond me, because I was on the edgy and snappy end of the spectrum. There are times last night I landed up snapping at Mattie, but then I realized he must be in a lot of pain and wasn't manipulating the situation. I spent a great deal of time sitting by Mattie's side and just holding him. After Mattie received the Morphine at 5am, he finally went to sleep. But at 7:30am something awoke me, and after only two hours of sleep I was up for the day.

I took a shower to wake up and when I got out of the shower, my parents were in the room visiting. My mom had an early MRI appointment at the hospital, and Dr. Bob text messaged me the results as soon as I alerted him the scan was done. The problem is my mom has two herniated discs, which would explain why she is having intense pain. This whole back pain situation has been unsettling for my parents and for us, and I am at least happy that the issue has been diagnosed, but my parents head back to Los Angeles on Monday, and the question becomes how easy is it to travel with a painful back?

While Mattie was sleeping, I had the opportunity to talk to Dr. Biel, Mattie's psychiatrist. During the oncology team's psychosocial rounds today, he heard about our session with the clinical psychologist. Lord knows how often my family is discussed during these weekly psychosocial rounds. We have SO many psychosocial issues, we could provide enough material for a textbook. None the less, I appreciated Dr. Biel's sincerity and for understanding my perspective on this, and frankly my opposition to sharing Mattie's prognosis with him is echoed across the entire Lombardi Clinic practice. I was very happy to hear that. In addition, Dr. Biel and I also discussed Mattie's pain complaints. We both assess these complaints to be legitimate and Dr. Biel alleviated my feelings about the potential to build up tolerance to Morphine. After I met with Dr. Biel, Dr. Synder stopped by. Dr. Synder is Mattie's oncologist. She and I discussed Mattie's counts (Which are FINALLY rising today!!! Mattie has an absolute neutrophil count of 20.), his level of pain, and his delayed MTP-PE reaction. I am very fond of Dr. Synder, and the irony is under normal circumstances, we most likely would be friends. We see things eye to eye. However, the beauty of Dr. Synder is she can handle Mattie. Which isn't an easy task, especially when it comes to having an examination. Mattie will roll up into a ball, and just doesn't cooperate. In fact, I remember in the Fall all the residents would come in and try to examine Mattie. Now I think they have learned not to bother him. Which I have to respect. They really try to accomodate him. But today, Dr. Synder worked VERY hard to rationalize with Mattie and explained to him why it was imperative for her to physically examine his stomach. We are trying to get down to the bottom of his stomach pains, and it is hard to do this when he won't let anyone touch or push on his stomach. Despite her best efforts, Mattie wouldn't comply to be examined initially. But I think Mattie sensed our disappointment in him, and then decided he better get Dr. Synder to do it, versus another doctor he may not know so well. So I literally stepped out of the room with my mom, so he could have a one on one examination with Dr. Synder. Dr. Synder said that Mattie cooperated and verbalized his pain. Excellent. His pain seems consistent with a bowel or severe constipation issue. So we are working on trying to address that issue. None the less, I am trying to positively reinforce Mattie for any mature or brave decisions he makes in his treatment plan. Such as being examined, stretching out and exercising his right knee, wearing his knee immobilizer, and taking oral medications!

Mattie's oncology nurse today was Nicole. Though we are very fond of Nicole, she is rarely assigned to work with Mattie. My joke with Nicole is, if we are in the hospital, she must be working. The timing always works out that way. Nicole and Mattie dress alike. His PJ themes tend to match her hospital scrubs. It is kind of cute that way. Mattie was fascinated by her gecko watch today and he even told Nicole that she was one of his favorite nurses. It was very cute. Even though Mattie is seven, he gets how important these oncology nurses are to us and to his health.

Mattie and I played some computer games this morning, and while we were doing this, Mattie had a visit from Anna (Mattie's physical therapist). At first Mattie did not want to budge, so Anna joined Mattie by the computer. That helped to reestablish their bond. Anna has been away from the hospital for two weeks because she just got married. Katie (one of Mattie's great HEM/ONC nurses) also came by to say hi, share her smile, and support. She watched Mattie play his computer game and helped act out some of the dancing characters on the screen. After Mattie played a round of the game, he then was interested to see the activities Anna brought up for him. Anna got Mattie standing and trying to catch bubbles floating in the air. However, as only Mattie can do, he switched the game to capturing bubbles with your tongue and EATING them (check out the picture!). Yuck! In fact, I even made a deal with Mattie, I would eat a bubble myself if he took his calcium supplement. I held my end of the bargain (what one would do for love), but Mattie could only stomach half of the supplement. So Peter and I continue the quest of finding a supplement he will take.

Mattie had the opportunity to meet Dan today. Dan is the Junior from Georgetown University, who I told you about yesterday. Dan spent several hours with Mattie and Linda today. This was the perfect setting for Dan to meet Mattie, and I am very grateful for Linda being present to explain Mattie's central line to Dan and to assist in the establishment of this relationship. Linda is a God sent.

Mattie enjoyed his time with Dan, and I hear Mattie spent a lot of time on his feet and even took a STEP! You can see that Mattie was busy taping Linda to a chair today. Not great for Linda, but wonderful physical therapy for Mattie!

Left: Mischievous Mattie, taping Linda up with some help from Dan.

Right: Mattie and his new buddy, Dan.

While Mattie was with Dan, I went for a walk around the hospital, but had to cut that short because of the down pouring of rain. I instead got a hot tea, sat down, and did one of my favorite pass times, watching people. While doing this, I literally fell asleep. I am so tired, I land up falling asleep wherever I am. Especially if I am not physically moving! As the afternoon went on, Peter joined me, and then my parents.

We would like to the thank the May family for the wonderful home cooked meal they provided us tonight. I hear Mattie ate some pasta and loved the frosted cookies. Thank you for going out of your way tonight! While I am away from the hospital, it is nice to know that Peter and Mattie are eating well.

I am writing this blog from home tonight. After 11 straight days in the hospital, I needed a break. Peter will spend the next two days with Mattie, and Mattie is thrilled. I think he was very pleased to have this father-son time. Brandon, Mattie's good buddy from the hospital, is making a special trip to visit Mattie at the hospital tomorrow. I can't thank Brandon enough for being such a good friend. They are united by cancer.

Mattie's nurse tonight is Sarah Marshall. Sarah Marshall is another fabulous nurse and a cancer survivor. Sarah Marshall was on vacation recently and brought back some gifts for Mattie. Thank you so much for the hat and t-shirt from Florida! It is so nice to be remembered and I continue to be touched by the amazing support and love Mattie's nurses have for the families they work with.

I end tonight's posting with two messages I received today. One is from my friend, Charlie. Charlie wrote, "It was great to read about the return of Mattie's good spirits and see the picture of him with the flyswatter working his arms and enjoying it. The picture of Tricia is priceless and it tells you how wonderful the nurses are and what they are willing to do to raise the spirits of their patients. They (and the therapists) are truly a wonderful bunch. I am glad you got out for a while with your parents but how awful an ending to that outing. I hope your mother’s MRI goes well and that she feels better quickly. I do wish you could get more rest and I saw your note about trying to take a nap while Mattie was sleeping. Unfortunately, a hospital is usually the last place you can rest with all the things going on 24/7. I think that increases the recovery time for a lot of patients and certainly stresses out their caregivers. As for Mattie’s intestinal problems, I am so glad you found someone knowledgeable, helpful and with the right attitude to help you. It seems that not only does one medical issue for Mattie create another and the treatments add to those issues as well. Hopefully, once Mattie is off all of the cancer fighting drugs his system will not take too long to return to normal and that in the meantime his problems and pain can be addressed."

The second message is from our former neighbor and friend, Goli, who is now living in NYC. Goli wrote, "Sometime ago, you gave me an azalea plant, that I have named "Mattie." Did you know I name my plants? That is how much I love them. Well, my azalea has been fighting very hard for its life. Sometimes it is doing OK, and sometimes it goes through shocks and I feel it is the end. But, it comes back better than ever each time. It is amazing. Even the plant you purchased and gave me fights and goes through nightmarish times, but it has your qualities, and comes back each time. The plant has joie de vivre, which makes it a fighter. I wish I were more like your friend Charlie, and could express my feelings and thoughts more eloquently. But as Charlie said,

"Odds have been beaten, .... someone has to be in the 10%." I think the only people who could be in that 10% must have the qualities that you three have. Never doubt your judgment about your son. You know him better than the whole world. In addition, you are the best professional in mental health I have seen in my life."

Thursday, May 28, 2009

Thursday, May 28, 2009

Quote of the day: "Sleep is the golden chain that ties health and our bodies together." ~ Thomas Decker

Mattie had another MTP reaction last night. You may recall he received MTP-PE on Tuesday evening. Within 90 minutes he had a reaction requiring the administration of Demerol to eliminate the symptoms. On Wednesday, almost 24 hours after the infusion of MTP, Mattie developed two different delayed reactions, one was at 4pm which required Demerol, and the other was at 1am. Mattie slept Wednesday away, so much so, that I was afraid he wouldn't sleep last night. However, after receiving Demerol at 1am, Mattie fell asleep around 2am. Mattie had trouble waking up today, not unlike on Wednesday. However, there were many causes for this. First of which is Mattie was in pain and needed Morphine at 7:30am. Second, Mattie needed both a platelet transfusion and red blood cell transfusion (which could explain his tiredness). In order for Mattie to receive blood products he must be first be premedicated with Tylenol and Vistaril. Vistaril is an antihistamine that simply knocks Mattie out. So Mattie had a triple whammy today: 1) Morphine, 2) Vistaril, and 3) he was severely anemic (low hemoglobin level). Thankfully though, I had no trouble administering Tylenol to Mattie. He woke up long enough to receive it orally and then went back to sleep.


Tricia was our nurse today, and she worked very hard to keep Mattie comfortable and safe. Mattie came to consciousness a couple of times and I told him that Tricia was his nurse and he said he knew she was around and clearly felt very comforted by that. I woke up this morning at 7:30am and took a shower, but after I was done, I was just not functioning very well and decided to take a nap. Napping is non-existent word in the PICU. I felt like I closed my eyes for 20 minutes and then there was a knock at the door. It startled me, and I jumped up, my cell phone fell on the floor in three pieces, and I came to the door barely able to catch my balance. At the door was Ann, who was waiting outside and did not want to disturb me and Dr. Rogers, a Gastroenterologist. Dr. Rogers was asked to come by and consult about Mattie's stomach pains. As I described the symptoms Mattie was having to the doctor, he felt that Mattie's pain was not indicative of an ulcer, but more irritable bowel syndrome issues. He had Mattie take an abdominal xray today, and he feels that Mattie is having spasms in that region that are very painful. Many things could cause this irritation, such as his diet, lack of mobility, chemotherapy, and of course pain medications.

Dr. Rogers has a good sense of humor and seemed open to finding ways to help Mattie. It was so funny, the consultation took place right outside Mattie's door, in the middle of the hallway. Clearly, Dr. Rogers wasn't happy with this arrangement and asked if I wanted to go to a more confidential place. However, in the PICU there are NO private meeting rooms to discuss sensitive patient information. I remember in August when I first arrived at the PICU, I was mortified that such side bar conversations would take place standing up in the hallway with others listening. However, after 10 months, I have become desensitized to the lack of confidentiality and privacy. In fact, I freely discuss ALL sorts of information in the hallway. Amazing how human beings can adjust and adapt to whatever environment they are in. I told Dr. Rogers that I am so beyond worrying about HIPAA compliance, that even he laughed!


After meeting with Dr. Rogers, I had an opportunity to sit with Ann and have the wonderful tea and special breads she brought me. Ann brought Mattie something hysterically funny today, a LARGE fly swatter. Mattie has threatened Ann and I for months now that he wants a fly swatter so he can design a game in which he pretends we are his "bugs" and he can chase us around and squash us. So Ann fulfilled a special request. The irony is that Ann and Mattie joke all the time about bugs. So much so that on mother's day when the hospital was featuring these huge sparkly fly shaped pins, Mattie made sure that I got a pin for Ann. Ann wore this fly pin on her jacket today, and Ann pulled it off very well because it actually looked lovely. I am sorry Mattie did not see this for himself, but I told him about it. Ann came to Georgetown today to help introduce me to a young man who is a Junior at Georgetown University. His name is Dan. Dan goes to college with Ann's babysitter. Dan is interested in working a few days for us this summer and he has experience working with children who have cancer. I am eager for Mattie to have various social experiences this summer, and I can't thank Ann yet again for helping me with another major task. I am just so absorbed with Mattie's care right now that I am really unable to secure Mattie helpers for the summer. None the less, I freely admit that I need help.

When Dan arrived, I had to jump back into Mattie's room and administer him a second dosage of Tylenol for his red blood cell transfusion. While doing this, Ann chatted with Dan and brought him up to speed with Mattie's situation. I had the wonderful opportunity to chat with Dan and Dan has agreed to come back on Friday at 3pm to play with Mattie for a few hours. It is my hope that they click and that Dan will be able to motivate Mattie physically in ways that I can not during the day. After all, in addition to being a Georgetown student, Dan is also on the Georgetown football team, so I would imagine physical activity is important to him. So stay tuned for more Dan updates.

After Ann and Dan left, I had a visit from Dr. Spevak and his nurse, Nan. Mind you I have had all these meetings today in the hallway. This is my new place of employment! Dr. Spevak is the head of pain management at Georgetown. Dr. Spevak told me that an epidural would be the best possible way to manage Mattie's pain after a sternotomy. I then asked Dr. Spevak some procedural questions since Peter and I found that there were many glitches with regard to pain management after Mattie's first surgery. However, I frankly think that limb salvaging surgery was something that the PICU hasn't had a great deal of experience managing, which may explain why we landed up have pain management wars among different medical professionals. We want to avoid that this time, and I told Dr. Spevak that I am not shy, and now that I have met him, I will have no problem personally calling him with issues that arise. He was open and receptive to that. Excellent!

My mom was sitting with me in the hallway through all of these interviews, and then after Dr. Spevak left, Denise our social worker came by to talk with us. I told her about our session with the clinical psychologist and my current concerns. I really feel like Denise understands my concerns and is advocating for us. Another social worker came by today to offer me a referral to speak to a psychologist for myself. I told Denise that I appreciate this idea, but in all reality what would I be going to therapy for? At the moment I definitely don't have the time since I am balancing Mattie's intense needs, but I also have some understanding of the therapy process. There is SO much about Mattie's illness that I can't control because having a child with a life threatening illness is horrific. No amount of therapy is going to change Mattie's diagnosis or the situation. In my perspective Peter and I are handling a parent's worst nightmare very well and proactively. However, what I need is a support group for other moms with children who have osteosarcoma. I do think that there are commonalities cancer families experience, but there are specific obstacles that osteo families must face and deal with that other cancer families may not have to face.

I had the opportunity to go on campus for lunch with my parents, while Linda stayed with Mattie this afternoon. Mattie slept for most of the day. While I headed to lunch with my parents, my mom had a very intense back spasm, which left her almost paralyzed in pain. It was at that point I realized that she needed medical attention and of course when I have a problem I call Ann. For those of you who don't know Ann, she balances a million things, however, no matter what she is dealing with, she responds to me immediately and always helps me strategize a solution. Ann and I spoke at lunch and she contacted Dr. Bob, who is now caring for another member of my family (my mom). Bob ordered a MRI to assess my mom's condition. After lunch, I spoke to Linda and she helped coordinate the MRI for my mom. Linda jumped through all sorts of hoops at the hospital. Georgetown's MRIs are all booked up for days and the only time the MRI could be scheduled for my mom would be at 1am on Saturday. So Linda started exploring other ways to get this done, such as going through the ER, or even another hospital. Linda did a great deal of calling around and even escorted my mom down to the MRI department to preregister for her 1am MRI. When the MRI folks saw my mom they said that there is no way she should wait until 1am on Saturday for this test, so instead they are taking her at 6:30am on Friday. Linda is a miracle worker, and I am very thankful to Ann, Bob, and Linda for helping me today, when I couldn't help my mom to the best of my ability.

When Mattie woke up, he was eager to play. Mattie immediately spotted Ann's HUGE fly swatter in the room. He LOVES it. Jessie (one of Mattie's art therapists) and Mattie played a pretend game about alien bugs, and Mattie had to swat them to prevent them from inhabiting the Earth. The alien bugs were made out of pipe cleaners, and Mattie was having a great time defending Earth. The funny part is the fly swatter is bigger than Mattie's head.



















While Jessie and Mattie were playing, I happened to notice that there was a REAL fly in Mattie's room. In 10 months, I have NEVER seen a real bug in Mattie's room, so I was fascinated with this fly. Mattie literally started swinging the swatter all over the room. He even got Tricia (Mattie's wonderful HEM/ONC nurse) to participate in the activity. Mattie had Tricia running around trying to swat the fly with her hands. However, in addition to her nursing skills, Tricia is also a skilled fly catcher. She literally caught the fly between her fingers! Mattie thought that was totally neat. Tricia wanted to get a laugh out of Mattie, and she pretended to eat the fly! We all couldn't stop laughing and I felt compelled to photograph this lighthearted moment!







We want to thank the Holm's family for a wonderful and tasty dinner. Evelyn, I loved the tea and the NEW cup. The desserts were out of this world. Thank you for thinking of us and supporting us even when you are 2cm dilated. You are amazing! Mattie loves the baseball bat you gave him filled with gum. He loves the bat and I love the gum!

Left: Mattie with a baseball bat filled with gum! He was fascinated by the gumballs inside that looked like baseballs.

An update on Mattie's condition...... Mattie continues to have an absolute neutrophil count of zero. He has been in the hospital 10 days so far for this admission, he has had two red blood cell transfusions, and three platelet transfusions. Not to mention he is pumped up on a ton of Morphine to balance mucositis pain and osteopenic pain.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "We take sleep for granted until we can't sleep for a night or two. I know how short tempered and irritable most of us are when we miss just one night's sleep, but what you are going through is like comparing a week of no rain in Virginia to the Sahara Desert. I really don't know how you are continuing to function at all. Every study I've ever read says that as your sleep deficit grows your ability to learn, to think clearly and to manage your emotions decreases. What an awful situation for someone who has to manage a child with roller coaster moods and multiple medical emergencies to be in. I suspect from reading Wednesday's blog and how much Mattie slept during the day that he (and therefore you) were up most of Wednesday night. I certainly hope that wasn't the case. I think at this point, Mattie's sleep cycle is completely off and the only way you will get any rest is to try to sleep when he does if you can even if that is during the day. Once you get him home you will have to work toward getting him back on a regular cycle of up during the day and asleep at night."

Wednesday, May 27, 2009

Wednesday, May 27, 2009

A CLASSIC MATTIE MOMENT TODAY: While Miki (Mattie's HEM/ONC nurse) was giving Mattie his Demerol, she told Mattie that she was sorry he wasn't feeling well. Mattie looked at Miki and sincerely told her that she had nothing to feel sorry for. He said that she wasn't the reason he wasn't feeling well, it was because of the MTP. That level of empathy caught Miki and I off guard. Miki then told Mattie that it was so nice of him to think of her feelings, and his response was, "well I am smart, you know?!" Got to love his modesty. Miki and I both laughed over this one.

Quote of the day: "Remember not only to say the right thing in the right place, but far more difficult still, to leave unsaid the wrong thing at the tempting moment." ~ Benjamin Franklin

Before I tell you about Mattie's day, I wanted to refer you to the picture on the left. Clearly it is a picture of a refrigerator! But you will notice there is a lovely apple tree creation on this refrigerator. Well this tree was drawn by Mattie for Erin, his nurse. Erin sent me this photo today, because she wanted to let Mattie know that his creation is very meaningful to her, so much so she posted it on her refrigerator. What can a mother say? Other than I continue to be greatly touched by these remarkable nurses, who despite our horrific days, find a way to get me to smile or to offer to help in some way.

Mattie went to bed at around 2am. He had a great deal of trouble falling asleep, and needed Morphine before closing his eyes. He continues to be in a great deal of pain. He reports that his whole body aches. I have learned today that in addition to having a calcium deficiency, Mattie also has a vitamin D deficiency. I suppose these go hand in hand, but Mattie will now have to take a 50,000 unit supplement of vitamin D each week. I feel that these deficiencies may help explain some of his aches and pains. Mattie requested a warm cup of milk last night too. So Erin (one of Mattie's HEM/ONC nurses) has started a great trend! The more milk Mattie consumes the better.

However, Mattie had a great deal of trouble waking up today! At 1:15pm, he finally stirred. Prior to him waking up, Margaret (a good friend and Mattie's first preschool teacher) came to visit. I sat with Margaret right outside Mattie's room and had lunch. The PICU is SO deserted, that it is easy to claim hallway space because there are only five patients present in the 16 bed unit. A real ghost town! It has been this way since Saturday. Margaret brought me a wonderful lunch and special desserts that I almost felt like I went to a french cafe today! Thank you! Margaret and I had a nice time chatting, catching up, and my parents even had an opportunity to talk with Margaret. After lunch, Mattie woke up and Margaret played with Mattie. He was receptive to the interaction, and Mattie was getting very frisky by trying to pull Margaret's belt off with "George," the name of Mattie's left foot. As the afternoon wore on, Mattie wanted time with just me, and we said our good-byes to Margaret! But Margaret and Mattie made plans for their next playdate together.

For the next hour, I played with the sand box Mattie created yesterday with Linda. I played about four different characters in this play scenario and we were having a great time in our interaction. However, nothing can be peaceful for us? I noticed that Mattie had the goose bumps on his skin. I felt him, and he felt very cold to the touch, which is unusual for Mattie. Within minutes, Mattie was very cold, shivering, teeth were chattering, and needed to be covered under three blankets. I went to find Miki, Mattie's wonderful HEM/ONC nurse, and Miki mobilized forces and went to get Demerol. I have seen this happen one other time when Mattie was inpatient. This was a delayed reaction to his MTP-PE infusion that he received on Tuesday. You will recall that Mattie needed Demerol on Tuesday evening, 90 minutes after his MTP infusion. Well today at 4pm, he was having the same sort of MTP reaction, and within five minutes after receiving Demerol, Mattie was fine. The Demerol however made Mattie fall into a deep sleep for two more hours. So in total Mattie has been conscious for about three hours today, so naturally I am VERY afraid for what the night holds for me. He may be rested, but I sure am not.

While Miki was giving Mattie his Demerol, she told Mattie that she was sorry he wasn't feeling well. Mattie looked at Miki and sincerely told her that she had nothing to feel sorry for. He said that she wasn't the reason he wasn't feeling well, it was because of the MTP. That level of empathy caught Miki and I off guard. Miki then told Mattie that it was so nice of him to think of her feelings, and his response was, "well I am smart, you know?!" Got to love his modesty. Miki and I both laughed over this one.

What I naturally worry about though is what if we were home today rather than in the hospital. How would I have dealt with this delayed MTP reaction? I have to pursue this with Mattie's doctor tomorrow.

Linda watched Mattie for an hour today so I could go outside and get some fresh air. Linda was in all day meetings, but seeing her is like seeing the American Red Cross truck come to a devastated area. She provides the same feeling of relief. I have been feeling sick to my stomach since I woke up this morning, so getting some fresh air really helped. I think the hospital room and air is getting to me!

My parents spent some time with Mattie and I this afternoon as well, and when Peter arrived from work, he took over. I then went outside again, brought my wonderful dinner with me that the Dunn family provided us, and chatted with my parents. We want to thank the Dunn family for their support, and of course for getting me my favorite salad. It was nice to sit down peacefully and eat, and for a moment, I felt more normal. I was able to have a real conversation with my parents and we had a few good chuckles too!

We are now on day NINE of this hospital admission. Peter tells me we have been inpatient 18 days during the month of May alone. Mattie's absolute neutrophil count was STILL zero today. As a reminder, here is what the Absolute neutrophil count (ANC) means. It is a measure of the number of neutrophils present in the blood. Neutrophils are a type of white blood cell that fights against infection. The ANC is calculated from measurements of the total number of white blood cells (WBC), usually based on the combined percentage of mature neutrophils (sometimes called "segs," or segmented cells) and bands, which are immature neutrophils. I was told today that Mattie's platelet count is falling along with his red blood cell count. So most likely Mattie will need a third platelet transfusion and a second red blood cell transfusion in the next day or so.


I want to thank those of you who wrote to me today and shared your perspective about the session we had with the clinical psychologist on Tuesday. I appreciated your words of support and for empowering me to have confidence in my decisions regarding Mattie. It means a lot!
I am headed to relieve Peter in a few minutes so he can go home, and perhaps be able to function at work tomorrow. However, nine straight nights in the hospital is no easy picnic, and the problem with all of this is there is no end in sight to any of the issues we are faced with. Any one can handle a limited amount of stress, but long term, it becomes quite a different story. I don't think our bodies are well programmed for this chronic type of stress. Think sleep tonight for us, I fear being up the whole night, and that is anxiety provoking in a way when you have so little to give.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Sometimes I wish people would consider this statement a little more closely. It is unrealistic to expect you to be open to having a discussion about the long term "odds" of Mattie's survival when you have to be involved in making decisions about his upcoming surgery. Sometimes medical folks forget that the "odds" or percentages are just that; they don't reflect individual patients, just a conglomerate of medical cases. Applying the odds to an individual is often not very useful just as predicting a lifespan isn't always helpful either. One has to deal with things on a day to day level first before you can look out into the future. I am not sure that sharing the "odds" of survival/recovery/remission with Mattie is useful; what exactly is he supposed to do with that information? As you said, how many of us adults know what we want to accomplish with our lives (big picture), so how meaningful could that question be to a seven year old child? If and when the time comes to make a decision to stop treatment, I think you will know in your heart and Mattie will know as well. If you, Peter and Mattie are united in a desire to fight this, then it is the right thing to do. Odds have been beaten, someone has to be in the 10%-and it can only be someone who has chosen to be treated, not just give up."

Tuesday, May 26, 2009

Tuesday, May 26, 2009

Quote of the day: "A friend is someone who understands your past, believes in your future, and accepts you just the way you are." ~ Anonymous

Either Peter and I are getting more tired, or today was simply a non-existent day. I felt like I was in an absolute fog all day long. Mainly because I never left the floor and I was dealing with one issue after another. So though Mattie was very stable today, played, and left his room, it was not a very good day in my book. When Peter and I have to brainstorm surgeries and the "meaning" (keep reading, I will explain) of Mattie's life, it leaves me upset, frustrated, and sad. In fact, do you think it is possible to be so upset that you can't pinpoint it to just one thing in your day? It was the whole day.

Before I tell you about our day, I do want to comment that Mattie and Erin had a wonderful time together last night. Erin is one of Mattie's HEM/ONC nurses. Erin encouraged Mattie to draw pictures for her while I rewrote the blog. Mattie drew five pictures for Erin and on the back of one of the pictures he wrote, "I love you!" Mattie came up with this on his own, and it was very touching, because I think he is truly fond of Erin. To me these nurses are simply angels. Despite their long hours and the difficult work they do (seeing kids and their families cope with cancer), they always have a smile on their faces and want to help. In fact, at noon today, Katie (one of Mattie's nurses) came in and asked me if I had lunch. If not, she was going to get me lunch. I was truly touched by Katie's concern and support. To me this goes beyond the call of a job description, but is the perfect illustration of the amazing women caring for Mattie. I am beginning to see that being an oncology nurse is not just a profession, but a way of life.

Mattie did not wake up today until after noon. It makes perfect sense to me that he would wake up so late, since he doesn't go to bed until 2 of 3am. While Mattie was sleeping, several people came by such as Jey, Mattie's "big brother," and Dr. Biel, Mattie's psychiatrist. Linda also stopped by and told me that the movie, the Pink Panther 2 was going to be shown in the childlife room or Mattie's room if he should want to see it. On some level Mattie sensed Linda's presence in the room, and he started to stir. Within 10 minutes, Mattie was up, dressed, greeted Miki (his wonderful HEM/ONC nurse), and had his vitals taken. He was motivated to get to the playroom. I considered this a very positive sign.

Linda watched the movie with Mattie and they had a long play session. Of course Mattie was thrilled. During this time, I had the opportunity to do laundry, change Mattie's bed linens, and then meet up with Tanja for lunch. Tanja is a friend and SSSAS mom. She brought me lunch today, and we stayed in the parent lounge so I could remain close to Mattie if he needed me. I had the opportunity to learn more about Tanja's family and I enjoyed hearing about her family in Germany.

After I had lunch, Linda came to find me and let me know that Mattie needed me. When I got back into the playroom, Mattie was beginning another project. He wanted to create a beach scene. Jenny, one of Mattie's art therapists, brought up some sand from the clinic. Mattie placed the sand in a beautiful box that Linda gave him. Jenny created a stick character for Mattie, named, "Jenny," and I played the lifeguard at the beach. Jenny joined us for a while, but then had to go back to clinic, because there was a full patient load there. Mattie did not want Jenny to go, but he did understand she was needed downstairs. When Jenny left, I suggested to Mattie that Tanja take over playing one of the characters on the beach. Mattie was amenable to that, and clearly had to warm up to playing with a friend outside his "hospital" circle. Tanja was very patient and sat quietly until Mattie was ready to open up and allow her in. Tanja and Linda then took Mattie back to his room, while I was talking with Dr. Synder. Tanja brought many wonderful items for Mattie today, such as a kiddie pool, rubber bugs, moonsand (which apparently is a type of sand, where you can pour water on it, but it never gets wet), his own red towel, and lots of pool toys. Linda inflated the pool in the room and I hear Mattie had a great time. I at first was disappointed that I missed the action, but then I went to my camera tonight, and low and beyond Tanja took pictures for me. Check it out. I love the picture where it appears Mattie is washing an alien.

I really appreciated Linda and Tanja's time today. They enabled me to chat with Dr. Synder about Mattie's lung surgery. Peter and I would like to have a multi-disciplinary team meeting prior to the surgery, just like we had with Dr. Bob. There are many things I fear about the next surgery, and frankly such a team approach may help to ease my concerns. I am grateful that Dr. Synder is trying to make this happen, and I was also happy to hear that Dr. Bob is being asked to sit in on this team meeting. Since he is a crucial part of our team. Bob called me tonight and told me that surgeons are not used to having meetings, which was actually insightful to me, because this paints a consistent picture with what I am hearing at Georgetown.

However, I am feeling very stressed out and landed up taking out my anger on my mother today. Denise, our social worker, was present for this too, and I am sure my mom knows how I really feel, but of course later on tonight I felt bad for my actions. None the less, I live in a trapped cage, where I am not able to vent anywhere. I always feel like I am under a microscope with people waiting for me to have a nervous breakdown. However, as I told the clinical psychologist tonight who came to consult on Mattie's case... breakdowns are NOT an option!

Peter came to the hospital at 5pm, so we could both meet with the clinical psychologist who is working with us on Mattie's case. Linda stayed with Mattie, so we were able to talk freely. We chatted for at least 90 minutes and came up with goals that we would like to work toward with Mattie. I do think the psychologist heard our issues, and was very open to strategizing with us. But I have major concerns about all of this. I realize creating structure and routine are important for Mattie, but are they important or even feasible right now? Before a major surgery? Peter and I were talking with my parents about the session, and they helped me realize that nothing will be normal for the next month or so, so how on earth do you establish normalcy with routines if there is nothing predictable about his recovery process? Excellent point, and since I now consider myself an expert on Mattie, they are right. It is impossible to establish routines when headed for another major crisis. I can't control the pain, I can't control Mattie's reaction to pain medication, and Lord knows what other complication (which I don't like to think about) can arise from surgery. So with that I pause. In addition, the therapist asked us how much Mattie knows about his prognosis. We said he knows about his illness but not his prognosis. After all we can barely handle and come to terms with his 10% chance of survival rate, how do you explain this to a seven year old? I believe in being honest with Mattie, but this type of honesty is counter productive from my point of view. I think she felt this would spur him on to fight for his survival, to be more engaged with physical therapy, and the like, but Peter and I both had a visceral reaction to this. In addition, she discussed the importance we all have for "meaning" in our lives. I concur with this wholeheartedly, until she suggested that we discuss with Mattie something he wants to accomplish in his life (kind of like what he wants to accomplish in his life before he dies!). Well I kept it together, but I wanted to absolutely lose it over this discussion. This dialogue about losing Mattie is not productive for me right now. This is too raw, and I told her I have no idea what a seven year old would want to accomplish before he dies, I can barely think about that answering this question for myself, and I am NOT seven! I do think the therapist has some valuable ideas about structure and routine, and I believe she wants to help us. But right now I am not sure I am open to help. It takes as much energy as I can to muster to be strong for Mattie and help him 24/7. I have no doubt Peter feels the same way! Asking more of us now just seems unfair, and I go back to resenting the initial referral for help. I get the intention, but I assure you unless you walk in my shoes and have a child who is so sick, then you really shouldn't be judging me.

Mattie received his MTP-PE tonight around 6pm. Mind you Miki, Mattie's nurse, was checking all day for the medication's order as well as when it would be ready. Funny how a whole day can go by without receiving medication. I really dislike Mattie getting medicated at night. Things always seem worse at night for us. Sure enough 90 minutes after his MTP infusion, he developed rigors and intense pain. Thankfully Mattie's nurse gave him demerol and the side effects went away after about 15 minutes. Mattie is now up and alert, and just finished a cup of warm milk. Erin introduced Mattie to this last night, and he loves it. Excellent!

Mattie's counts remain at zero, so we have no idea when he will be released from the hospital. Peter headed home tonight once everything was stable here. Keep us in your thoughts and prayers. As the psychologist said today, we are dealing with acute crisis and chronic stress. I agree with this assessment completely!

I end with a message from my friend Charlie. Charlie wrote, "What a change Monday's blog was from earlier in the week. I am so glad to see Mattie's good nature return. I think you have it right on; he has very little control over his situation so he attempts to control what he can which would be his response to the situation and to you. It is all very frustrating and exhausting. It was so wonderful to see Mattie back together with his friend Abigail. Friendship is so critical to all of us; it is a feast for a hungry and tired spirit. So it was great to see them enjoying doing kid things together. I agree with you that Mattie knows how much you've done for him. While he can't normally vocalize that, his desire to marry you after all this trauma tells you that your relationship with him is intact and very strong; you've done an amazing job balancing his medical needs against his emotional ones. I truly admire what you have accomplished this year although I am sure to you it seems like you haven't accomplished much at all. I am glad you got to spend Memorial Day outside the hospital; I hope next year your whole family is enjoying it together."

Happy Memorial Day!

Monday, May 25, 2009 -- Memorial Day!

Quote of the day: "What do we live for if not to make life less difficult for each other?" ~ Roger Bannister

Before I begin tonight's posting, we would like to acknowledge that it is Memorial Day and we are deeply grateful to the U.S. men and women who died while in military service and for those who dedicate their lives to protecting and safe guarding our freedoms.

Mattie and I were up until around 1am on Sunday, so another long night in the fight against Osteosarcoma. I was happy that Mattie fell asleep a little earlier than usual, because I was wiped out. Mattie did wake up during the night and complained of pain, but he was able to go back to sleep without Morphine. This morning Tricia, Mattie's wonderful HEM/ONC nurse, came in to let me know that Mattie would need another platelet transfusion today. So I woke Mattie up and asked him to take Tylenol, which is one of the premeds Mattie needs before receiving blood products. Fortunately Mattie complied and took the medication orally and then went back to sleep. He wanted pain medication for his mouth, since he appears to have mucositis there as well. But instead of giving Mattie Morphine, he received Vistaril. Vistaril is an antihistamine, and this is the second premedication Mattie needs before receiving blood products. The Vistaril knocked Mattie out until 1pm.

Peter came to the hospital at 10am to relieve me for the day. I packed my things up to leave and Tricia asked if I was okay to drive, since I am sure I looked like a sight. It was a pleasure to be home and take a shower in peace. Ann had invited me to a BBQ at her parent's assisted living community. It was nice to leave my daily reality, and enter the real world for a few hours. Sometimes when I am locked up in the hospital, I forget what month I am in, much less what holiday is approaching. Going to the BBQ today helped solidify for me that it was an important holiday. I had a good time chatting with Mary and Sully (Ann's parents), meeting some of their friends, and hearing music. Mary and I had a chance to chat and she let me know that she enjoys talking with me, which made me feel very happy because in the midst of what I am going through it is nice to know that that I can bring someone else happiness.

Later in the afternoon, I met up with my parents and we went out to lunch. We caught up and chatted about their trip to the hospital earlier today.

While I was out, Mattie had a very busy day filled with visitors. Liza, one of Mattie's favorite volunteers, came by to say good-bye to Mattie. Liza is moving back to NY, and will be doing an internship in New Haven, CT this summer. We will miss Liza, her lovely smile and personality. This is the hard part about getting to know folks at the hospital, these relationships aren't permanent. Mattie also had another visit from the Bentsen family. They have really spoiled us this weekend. They brought Mattie a dozen wonderfully tasty homemade vanilla frosted cupcakes. Peter really appreciated the coffee too, but the gift that truly caught Mattie's attention was the wonderful turtle shaped mood ring they gave Mattie. THANK YOU! The ring reminds Mattie of Roxana, his adopted sea turtle. Mattie received Roxana as a gift from his preschool director. Kim knows how much Mattie loves nature, and she thought Roxana would be a great animal to be able to track on the computer and follow her migration. Below you will see a picture of Mattie's hand and my hand, featuring the turtle ring. Mattie said he wanted to marry me today, and the mood ring is his wedding ring. It is very natural for boys Mattie's age to want to marry their mothers, however, this actually meant a lot to me. We have lived through hell this year, and though this could have torn us apart, it has only brought us closer together.

Left: Mattie's and Vicki's hands! Mattie is featuring his turtle mood ring!

Right: Mattie and Vicki!

At around lunch time, Tanja came to visit Mattie. Tanja is a friend and SSSAS mom. She brought Peter a wonderful lunch, and I appreciate the chocolate! Tanja gave Mattie a digital drum today, and Mattie has been making music ever since. He really loves it. When I arrived back at the hospital today, he played several songs for me, and was moving to the beat. We had a good time, and I loved seeing Mattie standing and using his arms! Thanks Tanja! Peter and Mattie spent a good portion of their day designing a Medieval village. This was an 1600 piece Lego set, which literally took almost all day to assemble! Mattie is very proud of his accomplishment.

Left: Mattie's Medieval Village!

Right: Mattie playing on the digital drum!

My parents spent some time with Mattie this afternoon as well, but Mattie seemed tired and just wanted to watch TV. However, he developed a second wind tonight and now it is midnight and he is STILL very up!

Mattie continues to be severely neutropenic. His absolute neutrophil count holds steady at zero. Mattie will receive MTP-PE on Tuesday and it is our hope that his counts will begin to rise soon. Mattie did have a follow up x-ray today of his right foot (the one with the small fracture in it). The results indicate NO fracture, but osteopenia and swelling (I await for Dr. Bob to confirm this!). Mattie's mood has lightened up, and he doesn't appear anxious or fearful. Peter and I are beginning to see that Mattie fears pain and will try to avoid it at all costs. As he begins to feel better, so does his attitude and his level of compliance to what we ask him to do. This of course isn't rocket science, but I guess we live in a world where we expect children to do what we ask them to do. However, what needs to be factored into these requests is that Mattie has survived two major surgeries and 10 months of chemotherapy. He needs to control certain things in his life because in all reality he has NO control (he has to be inpatient, he has to have surgeries, he has to get chemo, he can't go to school, etc....). So instead he controls how he receives treatment and how he relates to Peter and I. None the less, this has been a frightening and taxing week, and I hope we get a reprieve from these overwhelming mental health issues (I know these issues won't go away fully until they are dealt with, but not being in a state of crisis feels better).

At around 9pm, Mattie had a visit from his buddy Ann, and his friend, Abigail (Ann's youngest daughter, who was a classmate of Mattie's). These two had a great time together, and Erin (Mattie's HEM/ONC nurse) and I were in amazement, because Mattie looked like a different kid than the one we had been working with this last week. It was great to see Mattie laugh, play, and connect with a friend. He has been so opposed to having friends at the hospital, that when Ann suggested this tonight, I wasn't sure what would happen. Mattie and Abigail decided to do water play, but it got very creative. Bins of water came out, rubber bugs were in the equation naturally, and then they added all sorts of things to this concoction like salt, pepper, and goldfish. They enjoyed putting their hands in this mess, and Ann and I tried to capture this moment. Of course it wouldn't be fun unless Mattie got me to put my hands in this sticky mess. I did it, and Mattie loved it. It is also nice to have the opportunity to play and get to know Abigail too.

Left: The initial basin was filled with a sting ray, bugs, and clean water!

Right: Abigail and Mattie laughing over this mess. In fact, Chompy the alligator was also dumped into this bin!

Left: Look at the bin closest to the bed. You will notice the water looks orange. Well apparently this is what happens when goldfish absorb too much water. They become a soggy mess! The kids loved it!

After Abigail left, Mattie was hungry but he did not know what he wanted. Erin came in and offered Mattie a croissant sandwich with cheese inside. Mattie was intrigued and guess what? He ate the ENTIRE thing! Brava Erin! Erin is very good with Mattie, and her easy going demeanor has a way of cutting through Mattie's tensions. Unfortunately I wrote the blog once tonight, but somehow I landed up accidentally erasing the whole thing. I was VERY upset because it was hard to recreate what I originally wrote, especially at this late hour. As I am typing now, Erin encouraged Mattie to draw her a picture. So thankfully Mattie is busy drawing her a flower, and I am typing away. Here is a picture of the flower! He is now working on a tree for Erin!

I end tonight's posting with a message from my friend Charlie. Charlie wrote, "After so many changes of attitudes and emotions it is really hard to believe that Mattie might be over this "hump" at least for a while. It seems that this particular downturn has been with us for longer than most in the last several months. It is hard to know what is driving this (pain, boredom, medication, or some combination) but whatever it is, it makes life very difficult for everyone around Mattie right now. So it was especially good to see the Mattie smile reappear on yesterday's photos. It is also difficult not to know when Mattie's numbers will start to improve (or if they will without intervention) so that you can start making plans to go back home for a while. Everyone's exhaustion comes through in the blog; I hope Peter got to sleep last night and that you are able to trade off and catch some sleep as well soon. And of course, I hope Mattie's emotional level stabilizes so that play dates are once again on the schedule."

Sunday, May 24, 2009

Sunday, May 24, 2009

Quote of the day: "Endurance is patience concentrated." ~ Thomas Carlyle

Mattie was up until 2am on Saturday. He and I were watching a movie together, and I literally fell asleep and my head way bobbing on top of Mattie's. Mattie kept waking me up and was getting annoyed with me. I tried to watch the movie, but the will was there, but not the way. Fortunately Peter jumped up and down with Mattie the rest of the night, because I did not have the energy to do this. In fact, Kathleen, Mattie's HEM/ONC nurse, came in this morning and I had no recollection of her even being in the room. When Mattie woke up today, he was in a much better mood than he has been all week. However, I need to see a pattern, before I accept this as a reality. Mattie was eager to show Kathleen all his Lego creations and she was very impressed with "Chompy," the big green alligator he created yesterday. He also showed Kathleen his medieval castle he was planning on building today.

Mattie spent the entire day playing with Peter. Peter worked hard on engaging Mattie and building Legos. It clearly was a "boys" day, and three was a crowd. So after doing laundry, I packed up and went home. While home I cleaned up some things that I left all over the place before rushing Mattie to the hospital on Monday. I had the pleasure of taking a shower at home and then I went out to lunch with my parents. We had a nice lunch, chatted, and shared some stories. While at lunch, Peter called me with food requests from Mattie. Mattie is now craving cheese again, which is a great thing for him to eat, not only for his stomach, but for his calcium level.

Mattie continues to have an absolute neutrophil count of zero. It is possible that he may need another platelet transfusion on Monday, and of course he will be receiving MTP-PE on Monday. It is my hope that the blood tests confirming an ulcer will come back soon, because in my opinion Mattie should just be treated now. This stomach pain has been occurring for weeks, and Prevacid is not cutting it. Dr. Myers' the on call attending HEM/ONC physician told me today that many kids like Mattie who are neutropenic for so long, sometimes need intensive care. Fortunately Mattie is holding his own. Dr. Myers was very kind today, and asked what he could do for us to make this weekend easier. This is not a typical question I hear from a doctor! I thought it was very meaningful and meant a great deal to me, because yes it is a holiday weekend, and like so many holidays we have spent them in the hospital.

When I arrived back at the hospital this afternoon, I sent Peter home. He needed a major break! Playing non-stop for several hours is taxing. We want to thank the Bentsen family for their wonderful "Rolling Thunder" care package today. In Washington, DC, during Memorial Day weekend, the city is transformed by thousands of motorcycles. Here is some information on Rolling Thunder: Incorporated in 1995, Rolling Thunder, Inc. is a class 501(c)(4) non-profit organization with over 88 chartered chapters throughout the United States and members abroad. While many members of Rolling Thunder are veterans, and many ride motorcycles, neither qualification is a prerequisite. Rolling Thunder members are old and young, men and women, veterans and non-veterans. All are united in the cause to bring full accountability for POWs and MIAs of all wars, reminding the government, the media and the public by our watchwords: “We Will Not Forget.” The name Rolling Thunder is derived from the constant bombing of North Vietnam in 1965 and was given the name, "Operation Rolling Thunder." No officers or members of Rolling Thunder, Inc. receive compensation; we all donate our time (http://www.rollingthunder1.com/about.html).

The Bentsen family gave Mattie a shopping bag filled with American Flags, streamers, a great bandanna, and pinwheels. The idea was Mattie could decorate his wheelchair, and recreate his own Rolling Thunder. Mattie had a blast reading the lovely notes the Bensten family wrote to him, and he had a great time decorating. You can see Mattie in motion below. Also after Mattie decorated his wheelchair, he was motivated to show others. He left his room today! Hurrah! This was a first for him in several days. We saw some of his nurses, and they enjoyed his artistic creation. Peter and I were also given a pit crew goodie bag of chocolates and cherries, to help support Mattie Thunder!

Left: Mattie opening up his Rolling Thunder package, and he immediately put on the hat.

Right: The package motivated Mattie to get out of bed and decorate his wheelchair. I loved seeing Mattie use his legs and arms!

Left: Mattie was ready to head out of his room to roll down the hallway.

Right: Got to love that smile!

While Mattie went for a walk, he stopped by the parent lounge and was concerned about Linda's fish. He wanted to make sure they were fed. So we did that. My parents came with us, and Mattie had a good time staring at the fish and talking with my parents about them. They made up stories about the fish, and naturally Mattie was very interested in a particular aspect of the fish. Remember he is a boy and 7! The hot topic was watching and discussing the fish pooping. That provided him with great laughter. After the emotional havoc we have experienced this last week, laughter was very welcomed regardless of the subject matter.

Mattie continued to play with my parents back in his room. They made up pretend stories, featuring the main character, Captain Mattie. They were following the fish theme, and my dad and Mattie pretended to transform into a fish (the discussion of how they developed gills and fins was a riot), and they dialogued about this for at least 30 minutes. I just observed this discussion, and my dad worked hard at removing me from the play scene, so that Mattie was solely engaged with my parents. Mattie had a great time, and he eventually decided to watch a Scooby Doo video with them.

It is now 9pm, and I await Peter's return to the hospital so we can change Mattie's central line dressing, which is important, since his current one is falling off of his body. We tried to change his dressing last night, but we had to abort that disaster. I believe Peter will be going home tonight and will return tomorrow morning. It is my hope that Mattie is stable enough to have only one of us here at night. So tonight should be very telling. At the moment, Mattie is complaining of pain, and is whining. Which at this point that sound alone makes me edgy.

We would like to thank the Cooper family for a wonderful homemade dinner. The soup and pasta were delicious. We also want to thank the Magnuson's and the Cooper's for offering playdates today. Your support means a lot to us!

I would like to end tonight's posting with a message from my friend Charlie. Charlie wrote, "I hear your anguish at having to spend day after day at the hospital with everyone (especially Mattie) missing out on the joys and the ups and downs of a normal childhood. It must feel like you are frozen in time with the situation not showing a resolution or even a significant change any time soon. On top of that, there are no clear right or wrong choices for Mattie's surgery and chemotherapy; and certainly no guarantees regardless of the direction you choose. This is anxiety provoking to the highest level and causes you to continually weigh and revisit your decisions. Each new piece of information, rather than making things clearer, seems to muddy the water even further. I know you would like company but with Mattie's emotional situation as fragile and changeable as it is, it ends up costing more in emotional energy than you gain from a visit so you have to remain isolated in your "nuclear family" for the most part. I know this is hard on you since you are a very social, involved person under other circumstances. I just hope that Mattie's emotional reactions level off soon so that others can come and visit and provide some much needed social diversion for all of you."