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Matt Conover's SCT journal



 

Matt Conover's SCT journal

In Loving Memory of MATTHEW GARRETT CONOVER July 14, 1989 - July 5, 2002

 

Friday, July 05, 2002 at 08:11 PM (CDT)

Matthew passed away peacefully and quietly late this afternoon as his sister Megan held one hand, his brother Alex held the other, with mom and dad comforting both arms and shoulders. We were surrounded by many loved ones, including Chris, Goomps, our pastors, 8North nurses, Becca, and other doctors and nurses from the ICU and Hemonc.

Matt put up a long and courageous battle against his lymphoma, but it proved too much for his body after a relapse, a bone marrow transplant, and yet another relapse. The last few weeks in the ICU were spent on a ventilator under heavy sedation with little chance of improving. After much soul searching, we agreed to have this support removed.

Matt is in a much better place now. Our family is grieving but is at peace knowing that this battle has been won for Matt. We miss his smile, his enthusiasm, and his just being "tigger." We love him so much. Bye Matt. We will see you again.

David, Noelle, Megan, Alex, and Anna Conover

A service of the celebration of Matt's life and all that he gave to us will be held Monday, July 8th at 10:00am at Mt Lebanon United Presbyterian Church, 255 Washington Rd, Mt Lebanon (http://www.mlupc.org/). Visitation will begin at 10, the service at 11, and a reception following at 12. The internment will be private.

In lieu of flowers, donations which benefit the 8 North Oncology ward of Children's Hospital and cancer research may be sent to the: Matthew Conover Memorial Fund, c/o Karen Cullen 1394 Terrace Drive Mt Lebanon, PA 15228

Wednesday, July 03, 2002 ICU Day +20; Transplant Day +47

Matt has gotten neither better nor worse today.

We received a steady stream of visitors and a steady stream of notes on this web site. We check them often throughout the day. You don't know how much they mean to us during this difficult time.

Matt still looks good and appears to be very peaceful. We enjoy talking to him, knowing that he hears us even though he cannot respond back.

Needless to say our hearts are aching and the tears flow easily...

- Dave and Noelle

Tuesday, July 02, 2002 ICU Day +19; Transplant Day +46

Today was a very sad day for us. Matthew is not making much progress. Even though we have been fervently praying for a miracle, the doctors fear that they are losing ground against an unknown enemy. Matt's blood gasses are dangerously out of balance. The level of carbon dioxide is building in his blood to over 90%. His oxygen levels are below 45%. Even though the doctors have decided to treat Matt with medicine for PCP pneumonia, fungal infection, bacterial infection, and even his lymphoma, they do not see any progress being made.

If anything, Matthew grows weaker. He does not seem to be in any pain or discomfort. The ICU docs have assured us that they will not let him suffer. However, our original goal of getting to 8North grows dimmer. They are sure that he would not survive long enough off the machine to get to the floor.

Matt's progress is in God's hands now. Only God knows when he will take Matt. We can only pray that Matt is peaceful and calm when it is time. Until then, we will not leave his side.

Grandma Marion brought Megan and Alex to visit Matt tonight. They were able to sit with him and hold his hands. Mr. and Mrs. Mayfield, from our church, came to be with Matt and pray for him. He is sleeping peacefully. Please continue to pray for us.

- Noelle

 

Monday, July 01, 2002 ICU Day +18; Transplant Day +45

This was a setback day today. Turning on his belly did not do much, so they abandoned that. He was pretty stable throughout the day as we waited for surgery to come take out his original central line (since it kept coming back positive for a bacterial infection and only one of the two ports were working). Around 4pm though, his oxygen (SATs) began to drop. They suctioned, fiddled with his vent settings, tried hand-bagging but nothing seemed to hold it above 80% - it had been hovering around 90% for much of the day. They got an x-ray and it showed more haziness in his left side that was not there before. They don't know why.

Since his already on-the-border vitals fell, they have postponed the lung biopsy that they had hoped would shed light on just what is going on. We again will sit and wait. We have no choice. The docs are, as one said, "fearful" with this turn of events.

They finally did remove his infected line at 9 without any problems. Matt remains heavily sedated and paralyzed, and will remain so until they can get him back to better vent settings (hopefully).

Noelle and I are exhausted. It has been a long day.

 

Sunday, June 30, 2002 ICU Day +17 Transplant Day +44

What a 48 hours it has been. Our hearts have been so heavy at times that they seem to be dragging on the ground. We have also been so elated as well. Much has happened since our last update.

First the good news (well, at least as good as it can get). They feel for certain that although Matt relapsed, the relapse did not go to the lungs. As more of the pieces of the puzzle came to be known (e.g. test results, pathology reports), it became clearer to the docs that the lymphoma cells initially found in the lungs were cells that came in from the small amount of blood that was also extracted when they went into his lungs to try to find out what was going on (OK, his BAL for all our nursing friends!). This became clearer when they had also found these cells in the blood from his veins.

Given that, the second piece of good news is that the vinblastine is apparently working. They won't know for sure for a couple of weeks when the do another bone marrow biopsy and probably another CT scan, but the fact that the disease has not progressed (and given how extremely fast it always progressed) it is a sign that it is working.

So now to his lungs. Now that they have been able to separate the relapse from the lung "thing" that is going on, they are traveling down a different path. One of the side affects of total body irradiation (TBI) that he had before his transplant is, in fact, the exact symptoms that he has – inability to oxygenate, hard to breath, hazy lung x-ray, etc. They call it "interstitial pneumonitis". Knowing this too is good news. However, while the TBI damages the lungs to allow this to happen, something else is the actual cause. Finding it, and figuring out what to do about it is something else. ICU wants to do a lung biopsy ASAP. Hemoc says "no way, he can't handle that right now!" It could be an underlying bacterial infection. It could be viral. It could be something else. It could clear up totally on its own and no one will ever know. So once again, we sit and wait. This is a serious complication, so please pray for discernment by the medical staff.

They tried something new today: rolling him over on his stomach. They have seen good results with just doing something this simple, so they will put him on his tummy for 12 hours, switch him back to his back for 12. A regular rotisserie. Unfortunately they need to keep Matt totally knocked out for his comfort. He is on an unbelievable amount of drugs to keep him sedated (he has developed a huge tolerance to them – we joke that his next stop will be to Gateway Rehab). Kim, his nurse today, commented that she has never seen this amount of sedation given to a kid before, and that this was enough to make an adult comatose! They also have him paralyzed so that the ventilator does all his breathing. Matt looks quite peaceful now. Noelle said she hasn't seen him sleep on his tummy since he was a baby.

Part of our rollercoaster these past few days has been that Matt became increasingly anxious to the point of showing absolute fear whenever they went to suction him to remove the mucous in his lungs. His gasping for breath and struggle to cough up the mucous and deal with the hand-bagging they do between putting the suction tube down his throat was too much. Even the extra doses of morphine and Versed were less and less effective. We, as much as Matt, are glad he is out and can rest well.

Matt was very awake this morning before they did this. Dr. Wollman, along with Noelle and I, explained what we were going to do. Matt just nodded, shrugged his shoulders in his usual way just saying as he always has "whatever you need to do, I'll go along with it". He is such a good patient, so accomodating. The nurses love him.

One great thing that happened this weekend was that the "big guns" of the ICU and Hemoc were on call at the same time, and they both checked in on Matt at the same time. Noelle quickly cornered them and started hammering them with questions and had them playing off each other (do I need to say that the night before Noelle spent hours on this laptop searching for everything she could find on interstitial pneumonitis?!). Having the two most experienced doctors talking about his care and exchanging ideas was great, and will surely lead to a better prognosis for Matt. Tomorrow we all will talk with the BMT big gun to get his input as well. Thanks God for making this "coincidence" happen!

Right now the we are cautiously upbeat, but we know the road is still long ahead of us. Thanks to you all who have been so supportive of us on this journey.

 

Saturday, June 29, 2002  ICU Day +16 Transplant Day +43

Matt is still resting comfortably and on the same ventilator settings - no change.

Noelle and I had a rough 24 hours beginning Thursday evening as we contemplated the next set of steps. The ICU docs were feeding us on how they viewed it, and what options were open to us: keep waiting as is, insert a feeding tube, tracheotomy, pull the tube, ... What we have been missing though is how Hemoc (his blood cancer docs) view it. We (read Noelle) let them know that we wanted some answers, or at least their best guesses, on what their prognosis is. Noelle has been in active discussions with parents and doctors around the world who have some personal information on cases like Matt's. She has even had papers faxed to Children's. She leaves no stone unturned - she is such an advocate for him! Thank you honey!

Finally yesterday afternoon Hemoc came back to us. They feel that the vinblastine is working because if it wasn't his aggressive disease would be showing up all over (lots of enlarged lymph nodes). They feel that the lungs were damaged - due to a fluid overload in the OR that got us here in the ICU in the first place or due to the lymphoma itself - and that it will take another 3-4 weeks to heal. They want to sit tight, keep his vent settings as is (basically he is breathing on his own with pressure support and lots of oxygen) so that his lungs can rest and heal - no more playing with the settings as they had been over the last 2 weeks.

We are meeting today though with Matt's primary Hemoc doc, Dr. Wollman. He knows Matt the best and knows us the best so it should be informative and calming for us.

We are also going to have a "care plan" meeting early next week where we sit down with the Hemoc and ICU docs and nurses in a conference room and come up with a plan of action for the next few weeks. Part of the problem is the lack of effective communication between all parties, and this forces not only that to happen but also forces the docs to put their best guess out there and "lay it on the line" rather than be non-committal.

I realized last night that little has been said about the other kids at home! Alex and Anna thoroughly enjoyed vacation bible school this past week and Alex loved "traveling camp" that occurred every afternoon after VBS - lots of trips to pools and trip to Sandcastle, the local water park. Alex is also very busy with travel baseball (their first tournament is this weekend). Anna is a joy. I had a good time with her in the pool yesterday when I went home. She is a real fish! We just put her in her bathing suit that has the flotation foam sewn right in and she just jumps in and paddles around - great for a 3 year old! Megan is having a ball with her two softball teams (one in-house slow-pitch, one travel fast-pitch). She's a great player and has made friends with a great bunch of girls, including some recently-graduated seniors who have taken a liking to her and included her in going to get a bite to eat after the games, etc. She is fortunate to have these girls right now to be role models (all jocks, all going to college, all with their head on straight), especially after her less-than-happy freshman year.

We have lots of family in this week, so our kids have lots of entertainment. Greg (my brother, aka Chris's husband) and their kids are here and my stepmom Marion and her daughter Laura also are here. We are blessed to have them here with us.

 

Thursday, June 27, 2002 ICU Day +14; Transplant Day +41

Well, no real changes to report. Matt is pretty much still holding his own. He has not really improved nor has he fallen back. He had his second dose of Vinblastine yesterday and as a result, they were able to get many more secretions out of his lungs. He has been able to maintain a good oxygen saturation level but it is not near the number that they need to extubate him. So we sit and wait. We are waiting for the time when Matt's body will tell us that he can breathe without the machine. We are anxiously waiting for that moment. It is not a quick process, unfortunately.

Aunt Chris stayed with me at the hospital last night. It was a great visit. Her family arrived from Mexico tonight, safe and sound. They are all staying at our house, but Aunt Chris can deal with the chaos. David and I are here with Matt tonight. We lucked out again and got a sleeping room. Matt's step grandma, Marion arrived tonight from North Carolina to visit too.

We will be meeting with Matt's doctors in the next few days to develop a care plan for him. This will help us make the difficult decisions that lie ahead. Hopefully, the drug will keep working and we will be bringing Matt home soon. We can all pray for that.

Thanks to all who are taking care of our family. Alex and Anna had a wonderful time this week at VBS. The meals continue to be a blessing and we appreciate all the prayers and messages.

- Noelle

 

Wednesday, June 26, 2002 ICU Day +13; Transplant Day +40

Well, I wish I had great news but all I have is that Matt remains pretty much the same. The last few days have not seen much progress in his breathing (for all our nurse friends who ask: he is still on pressure support (gives an "ummph" to each breath) at a PEEP of 6, an oxygen of 90% and with that maintains a SAT (oxygen in his blood) around 90%). Fortunately he gets his next round of vinblastine today that we really hope will abate his cancer some more in his lungs and get him off the ventilator.

Matt is much more wakeful now, probably because he has become used to the whopping doses of morphine and Versed (the "I won't remember anything" medicine) that he is on. He seems to be doing OK, but he is a little frustrated by the tube and his inability to speak and tell us what he wants. He is also not strong enough to point to pictures or letters let alone write. He is also his ornery self when it comes to where all the IV lines, heart and pulse monitor leads, and breathing tubes are lying across his body. He seems to be always repositioning them and picking at the tape that hold a lot of these in place!

They did remove his urinary catheter and he is much happier that it is gone! I think he was more bothered by the tape on his leg that held it in place rather than the catheter itself. The nurses can't believe that he has enough awareness in his periods of deep sleep to tell us when he needs to go.

In usual Matt fashion, nothing is ordinary. He developed a red mark on his upper right arm the other day that was warm to the touch. They x-rayed both arms, took blood cultures, and measured his arm circumference. By the time they got results back (which showed nothing) it was gone. It has reappeared - and disappeared - twice more since then. He also had some blood in his urine that they think is a bladder infection. Since he also has tested positive for bacteria in one of his central lines, he is back on some antibiotics that should take care of both infections. Yesterday he got these weird, small boil-like bumps on his neck. They kind of look like chicken pox: small fluid-filled bubbles. Kind of looks like he has small beads of sweat on his neck! They are not yet sure what it is - maybe today some results will come back. They are not too concerned though. He is still immunosuppressed (did I spell that right?). Even though he has a nice white blood cell count and a good ANC (a measure of his germ-fighting capability), he has no antibodies that are the real first line of defense against most germs that we encounter day to day.

Since Matt is pretty stable, Noelle and I have been taking turns staying here (I had last night's shift). It is a lot easier on us this way but living out of a suitcase is a pain. We've been managing to get a room here at the hospital luckily - we can't stay in his ICU room. There are not enough of these sleeping rooms for all the parents who need to stay. Last night there were 20 signed up for the 12 rooms available. Everyday they have a lottery to see who gets a room. We've been lucky so far. The rooms are much like the dorm rooms of our past: small, a passable bed, a nightstand and a phone with a communal bathroom in the hall. Some of the rooms are windowless and we find ourselves fumbling in the dark to read our watches by the light that seeps under the door because we don't know if it's 3, 5 or time to get up! Some of the rooms are next to the ventilation ducts and some next to the elevators, so they can be quite noisy. Oh well.

We have had a nice stream of visitors including a lot of the friends we have made here in the hospital (nurses, doctors, and other families). Fortunately visitation has worked itself out - we are only allowed 2 visitors at a time (including us!) and we have not had any clashes with multitudes of people showing up at the same time! If you'd like to visit, you may want to email Noelle (her address is at the bottom) to coordinate a time if you'd like. Although we have no phone, we did find a phone jack so we have the internet and email access (we have to stand while doing it though). Since then Noelle is much happier!

Noelle mentioned in the last update that she has been in contact with a mother whose 5 year old daughter has been through exactly what Matt is experiencing - NHL ALCL diagnosis, chemo, relapse, transplant, relapse in the lungs, vinblastine - and has been in remission for 6 months. Noelle has contacted her doctor as well as a doctor in France who has done a lot of the vinblastine research and has hooked them up with our doctors here. Noelle is amazing with what she can do on the internet!

This gives us hope, but we are torn between hope and the reality of just how sick and of how severe relapse in the lungs is...

Please pray that the vinblastine he gets today will ease us off the ventilator, and that if God proclaims it, gets him back into remission. We miss him.

Sorry for all the rambling. I know our last few posts have been more terse than usual, so I thought I'd catch everybody up.

- Dave

 

Monday, June 24, 2002 ICU Day +11

Matt had a good day today. He continues to need less assistance from the respirator and his breathing is less difficult. Something (?) seems to be working. He is getting a lot of much needed rest and for the most part, is quite stable.

We are hoping that in a few days he will be able to get off the machine and back to 8N. The doctors are pretty certain that this will happen. Then we will be making some decisions. The drug, Vinblastine, seems to be working. He will receive another injection of it on Wednesday. I heard from a couple of families today whose children were in similar circumstances and they have done quite well on this drug.

I have hope tonight. I will not lose hope that this drug might really help Matt. This is what kept me going today. We had many visitors - a lot of doctors and nurses from 8N came to see Matt. They are all pulling for him too. Your messages and notes have been a joy to read. I know everyone is pulling for Matt and wishing us the best.

Thanks for all your support. Here is to a brighter tomorrow.

- Noelle

 

Sunday, June 23, 2002

There is not much new to report. Matt is still holding his own on the respirator. He has been weaned down to an oxygen level of 60% and he is doing all of the breathing himself. We are still hoping that in a few days he will be able to come off the machine.

Thanks for all the thoughts and prayers on the site. They mean a lot to us. We are tired and weary.

- Noelle

 

Friday, June 21, 2002 at 10:50 PM (CDT)

It is with a heavy heart that we write to all of you who have fervently been praying and supporting our family. Matthew has relapsed. His disease has spread to the lymphatic system in his lungs. It is very rare for this to happen so soon after a transplant. Because his immune system is so weak and because his disease is so aggressive, there are no more treatment options available for him. The doctors have decided to try one last drug, called Velban (Vinblastine) to try to shrink the quickly growing disease to provide him comfort and buy him some more time. It is so aggressive that a CT scan revealed nothing seven days ago. Yesterday's scan showed disease throughout his lungs. If the Velban works, we may be able to get Matt off the respirator, back to 8North, and hopefully, home. If it does not, he will probably not be able to get off the respirator.

We are hopeful that we will be able to get Matt home. That is what our family wants. Please pray for this and for comfort for all of us as we struggle to accept that Matt has waged such a valiant battle and may not win. We have told our own children.

Please keep prayers, cards, letters, messages, support, etc. coming. We need them more than ever. Matt is a special kid. He has always been destined for something great. We just didn't know what God's plan is for him.

If you are a friend of Matt's, please show this to your parents, pastor, teacher or other adult who can weep with you. We know that this will deeply and profoundly affect you, and you need not do it alone.

Love, The Conover Family

Thursday, June 20, 2002 Transplant Day +34

 

Another long day in the ICU. Matt continues to breathe with the respirator. His lungs seem to be improving a bit but he still requires almost 100% oxygen. He is heavily sedated now because he has been fighting the machine and it causes his oxygen saturation levels to fall. He is somewhat responsive if you try to wake him up but all of the sedation makes him sleep most of the time. This is good - his lungs are getting a much deserved rest.

Lots of visitors came today. Pastor Freeman from the hospital, Kelli Maravalli from our church, and Matt's beloved "other mother", Franci. Special thanks to my friend, Lisa, who came to sit with Matt tonight while David and I got home to see the other children and be with them for awhile. It is good to come home and spend some time outside in the green grass. The ICU is no place to be on a beautiful sunny day.

Please continue to pray for Matt. We are taking baby steps toward getting him off the machine. That is what we hope for.

- Noelle

 

Wednesday, June 19, 2002 Transplant Day +33

I know that all of you have been checking the website each and every day to follow Matt's progress. We are so grateful for all of your support and concern. Today has not been a very good day for Matt. His numbers on the ventilator all went in the wrong direction. He was not able to maintain the decreases that he had been tolerating up until now. He is back on 100% oxygen and a pressure of 8. In order to get off the machine, he will need to be at at least 50% oxygen or less and a pressure of less than 5. It is difficult for them to turn the machine down because each time they do, he has trouble oxygenating his blood.

The doctors are a little closer to determining the underlying process that is causing him so many difficulties. Today, they took another CT scan of his lungs. The results tomorrow will yield an answer one way or another. They are relatively sure that it is not fluid, blood hemmorage, or PCP Pneumonia that is to blame. They are not really sure what it is but some test results will be back tomorrow. So we sit and wait and pray.

David and I were lucky enough to get a sleeping room here at the hospital tonight. It is based on a lottery system and our number got called. Last night, I slept bedside but didn;t get any sleep. Too much going on. We lost our room on 8N, so we will not know from night to night where we are sleeping. We feel like refugees.

We are very tired. Aunt Chris is tired. The kids are tired and most of all, Matt is tired from fighting so hard in this battle. He does not deserve this at all. Thanks to all for pitching in - we are really grateful for all the help.

- Noelle

 

Tuesday, June 18, 2002 Transplant DAY+32

Matt is making progress. His numbers on the ventillator are going in the right direction. The docs are slowly weaning him off of the machine. His lungs actually look a bit better on the xrays and the fevers are going down. He seems to be getting better but nobody knows why or what he has!

The good news today is that Matt does NOT have PCP pneumonia. This is a very serious infection of the lung and not a good thing if you are allergic to all the treatments, like Matt. So they discontinued the drug, which was very toxic. The doctors will continue to look for an answer, but it may very well be that there is no answer for this. Perhaps it might have been a virus. There is a chance it could have all been caused by fluid overloads from the procedures he had under anesthesia. We may never know. However, if Matt gets well, we won't care.

David, Aunt Chris and Alex came to visit this evening. Alex did such a great job visiting with his brother. I am so proud of him. He held Matt's hand and talked to him. He was very brave walking through the ICU. David's sisters came into town today. Kate visited this afternoon and Aunt Amy came this evening. It is nice to see them. Our wonderful friend from 8N, Sarah, also came. Her son, Chris, is doing very well off treatment. I loved seeing her too.

We hope to have another good day tomorrow. Matt looks really good and we hope that he is on the road to recovery. Only time will tell. Thanks for all your prayers and messages. It is very isolating here in the ICU and I am thrilled to report that our room has internet access so I can always have my trusty computer access to the outside world. Thanks for supporting us.

- Noelle

 

Monday, June 17, 2002 Transplant DAY+31

Matt is still on the respirator. His lungs continue to rest and hopefully, improve. There were at least ten different doctors in his room today, and each seems a little bit puzzled. They are still not sure of the cause of Matt's pneumonia. They seem to feel that it is the PCP but unless they can isolate a sample, they do not want to leave him on the potent drugs used to treat it. So they decided to do ANOTHER bronchoscopy today to get a sample.

Unfortunately, we do not have any results back yet. They did find some bleeding when they went in, which they are unsure about. They are not sure whether they are causing the bleeding by doing the procedure or whether the lungs are oozing blood for a different reason. Either way - it is unsettling.

Matt is so strong. He really looks good - his color is good and his numbers are good. We are hopeful because things seem to be going in the right direction. The docs said today that they might never know what caused this problem but it may get better. I said that we would be happy with that outcome. However, if he doesn't get better and they don't know what has caused this...then I will be mad.

We are exhausted. It is terrible for families at Children's Hospital in the ICU. There is no support, like on the unit, no sleeping arrangements, nothing. I cannot believe how terrible this all is. I really miss our "support system" on 8 North. They are so great. Several of the nurses have been down to visit Matt.

I am home tonight with the kids. I missed them so much - hadn't seen Alex and Anna in over a week. Back to the hospital in the a.m. - hopefully we will know something soon. Thanks for all your encouraging wishes. Please continue to keep us in your prayers.

- Noelle

 

Sunday, June 16, 2002 Transplant Day +30

Night Update

OK, we made some progress today! Matt's vitals remained steady all day and they have been slowly reducing his oxygen requirements (from 100% last night to about 65%). Hopefully when we see him in the morning it will be below the 60% that the docs want to see. They also stopped the paralyzing agent so by the evening he could move and acknowledge us. I can't tell you how good it felt to have him squeeze my hand!

The docs now feel pretty strongly that he has "PCP" pneumonia. They haven't got a culture yet (they may do that tomorrow if he is strong enough), but the evidence certainly points to it. They have started him on a strong antibiotic and because he has reactions to the two main antibiotics used against this bug, they are also giving him the same main chemo drug he has had for his chemotherapy - it does to fast-growing bacteria what is does to fast-growing cancer cells! It may also introduce the same side effects, mainly mucositis. Oh well, we've "been there done that" so we can deal with that!

Also, by the end of the day the kids were getting along better. Megan came out this evening to visit Matt, and I think they both were happy to see each other.

Chris just arrived I hear and Megan and Alex are very happy!

We'll take the small wins today, and hope and pray for more tomorrow.

Morning Update

Matt had a good night I guess(?) - he is heavily sedated and they put him on a continuous dose of the paralyzing agent. He is unconscious and unable to move with just the rise and fall of his chest from the respirator giving any indication of life. Still no word on the cause of his fevers. His BP, heart rate, and oxygenation are reasonably good which is what they are all about in the ICU. His white count is continuing to rise and his temperature remained steady at 104 through the night(rather than falling as they had in the past). They now have him lying on a mat on his bed that runs cold fluid through it in order to get his temp down.

Mom and I are hanging by a thread...

I am at home to see the other kids and get some stuff done around the house (laundry started, errands run, etc.). It is clear that this is taking its toll on them. Alex burst into tears when I picked him up from his friends house. Anna is whiny and Megan snaps at her and Alex at the slightest provocation. None of them are getting along. Chris can't get here soon enough.

 

Saturday, June 15, 2002   Transplant Day +29 Nightmare Day +3

After another rough night Friday night, Matt ended up on a respirator (breathing machine). His blood oxygen levels fell very low, and he had a lot of fluid in his lungs. They went in with a scope and extracted some of the fluid in his lungs to try to determine what was going on. The preliminary results back this evening are negative, meaning they haven't found any germs yet. They did find a little blood in the fluid which was not totally unexpected given the low platelet levels he has had. Fortunately the blood could explain the breathing problems and the coughing that he has experienced. Unfortunately, that still does not explain the fevers that he has been experiencing for a week now. Hopefully tomorrow will bring that news.

The plan is to slowly wean him off the respirator over the next couple of days. He is resting very well as he is heavily sedated tonight which he needs - it's been a few nights of no sleep for him.

I can't say how upsetting it was for us to see him on a respirator. It really hits home just how sick he is right now. We (Noelle and I) are both in his room on 8N for the night - they won't let anyone stay with him when he is on a respirator. This is really hard on Noelle, as this is the first time in 140 days of hospitalization that one of us has not been at his bedside at night.

We have some very good news in that Aunt Chris is once again flying here from Mexico to man the homefront while we do battle here. We can't thank Chris, Greg and their kids enough for what that means to us.

Much thanks goes to Lisa who is always there for us (it's so nice to have a good friend who is a stone's throw away from the hospital), and to Franci who mans the phones for us back home in Lebo, and many thanks to the moms that take in Alex as one of their own, and of course special thanks to Goompi who takes care of Anna!

- David

 

Friday, June 14, 2002  Transplant Day+28

UPDATE#2, Friday 10pm: Well, dad is home and mom remains behind at the ICU with Matt. He is doing well with his blood pressure and his pain and is trying to rest (it's awfully hard in an ICU). His lungs are clearing of fluid but he remains on oxygen. We met with a new set of doc's today - the infectious disease folks (which is where we started 8 months ago!). The hope is that they may see something the oncology, gastro, and ICU docs are missing. Noelle got a much needed nap and a shower this afternoon, so she feels a little better. One nice thing about the ICU - can you believe I said that? - is that they kick all visitors out between 7 and 8 during the shift changes (so they can exchange information freely), so Noelle and I got to go out to dinner. It felt good but we struggled to dance around what we are really thinking and feeling... Well, I need to get back to Alex who is anxiously awaiting my much needed attention! Until tomorrow, David

UPDATE, Friday 3pm: Matt's pressure is back up and he is resting comfortably in the ICU. He has had lots of tests, pokes, prods, and questions (without any complaints - he is a trooper!). Next they will slowly try to remove the excess fluids in his system which should clear out his lungs. He will stay the night and hopefully be back home on 8N tomorrow morning.

Matt did not have a good night. The anesthesia for the endoscopy and colonoscopy were very hard on his weak immune system. He was not able to handle the drugs and the fluids the way that most people can. Because of this his blood pressure dropped and his lungs filled with fluid. The great nurses (thanks Heather!) of 8N were able to keep his numbers as stable as possible but this morning they decided that it is best for Matt to go to the ICU. We will be moving there in a short time.

Once again, this is the best place for Matt right now. One-to-one nursing and the ability to monitor blood pressure and oxygen levels are what they do best there. It is very difficult for us to go there again, but if it helps Matt, then that is where we must go. Hopefully, we will only be there a short time while they get him stabilized.

We won't be as in touch there. There are no phones. We will try to update the site as much as we can. Please continue to pray.

 

Thursday, June 13, 2002  Transplant Day +27

I guess I'll start with the obligatory facts...

The CMV blood test came back negative (no nasty virus) - hooray! The CT scan from yesterday did not show much of anything - hooray! The endoscopy and colonscopy Matt had today went well and showed no sign of infection - hooray!? (so where are his fevers coming from?...) The doctors noticed that he had a "slow" colon, and that would explain his occasional vomiting and cramping that he has had since the transplant. When he got back to his room, though, he was pretty sore (mainly from the two bone marrow biopsies, one from each hip) and he gave himself a lot of Dilaudid (morphine) from his PCA. Coupled with the residual effects of the anesthesia, his blood pressure dropped to 80/40 tonight. Needless to say, they are monitoring him closely and it will mean another relatively sleepless night for mom and Matt.

He is still cycling through high fevers, but the doctors have noticed that they are attenuating over time, so maybe the various antibiotics, anti-fungals, and anti-virals he is on are working. Still, this is too close to how he started out back in October...

So now to the emotional and spiritual realm...

We're tired. We're full of questions. We're angry (why Matt?). We're worried. We're scared.

This "be patient" stuff is starting to wear very thin. I think six weeks in the hospital is taking its affect on all of us. The not knowing, the quickly changing conditions, the waiting for tests, doctors, and more tests...

Pray for strength. Pray for answers. Pray that God would make himself felt in all this.

- David

 

Thursday, June 13, 2002  Transplant Day +27

I guess I'll start with the obligatory facts...

The CMV blood test came back negative (no nasty virus) - hooray! The CT scan from yesterday did not show much of anything - hooray! The endoscopy and colonscopy Matt had today went well and showed no signs of infection - hooray!? (so where are his fevers coming from?...) The doctors noticed that he had a "slow" colon, and that would explain his occasional vomiting and cramping that he has had simce the transplant. When he got back to his room, though, he was pretty sore (mainly from the two bone marrow biopsies, one from each hip) and he gave himself a lot of Dilaudid (morphine) from his PCA. Coupled with the residual effects of the anesthesia, his blood pressure dropped to 80/40 tonight. Needless to say, they are monitoring him closely and it will mean another relatively sleepless night for mom and Matt.

He is still cycling through high fevers, but the doctors have noticed that they are attenuating over time, so maybe the various antibiotics, anti-fungals, and anti-virals he is on are working. Still, this is too close to how he started out back in October...

So now to the emotional and spiritual realm...

We're tired. We're full of questions. We're angry (why Matt?). We're worried. We're scared.

This "be patient" stuff is starting to wear very thin. I think six weeks in the hospital is taking its affect on all of us. The not knowing, the quickly changing conditions, the waiting for tests, doctors, and more tests...

Pray for strength. Pray for answers. Pray that God would make himself felt in all this.

- David

 

Wednesday, June 13, 2002  Transplant Day+26

I could not update the server last night - it was down. So yesterday's update follows at the bottom of this page.

Matt needs your prayers. He is not doing well and the fevers continue to spike higher and higher. Most have been above 105 degrees. His night was not good and he has severe abdominal cramping and nausea that comes and goes. The doctors have two theories. He either has an infection or this is a sign of a relapse. We are desparately clinging to the hope that it is an infection of some sort. However, even that news is not all good. Some infections, for example bacterial, respond very quickly (within a few days) to antibiotics. If there is no response and the fevers remain, then they feel it must be fungal or viral. These are much harder to treat.

If it is fungal, it will be covered by starting him on Amphoceterin B, an anti-fungal he was on last week. This should take care of any fungus in the gut. If it is a virus, then what kind? There are so many and each has a specific blood test to determine it. The serious one is CMV. We are still waiting on those results from yesterday.

If it is neither bacterial, fungal or viral, as determined by blood tests and response to medicines, the next step is to get a biopsy from inside the lining of the stomach. So tomorrow, Matt will have an endoscopy and a colonoscopy to get a tissue sample to determine the origin of the infection. In addition, while he is under the anesthesia, he will have a bone marrow biopsy to see if there are any detectable lymphoma cells.

This is all a waiting game. It is agonizing for all of us and Matt grows weaker by the hours. I am asking for everyone to please pray for us and for Matt to be strong and brave in the face of this adversity. Please pray for his CT scan today and the tests tomorrow - that they go smoothly and there is no bleeding. He has very low platelet counts and that can be dangerous. Thanks for caring. We couldn't do this without all of you.

- Noelle

 

Yesterday's update (in case you didn't get the email update) Transplant Day+25

What a day! Matt continues to battle against an unknown enemy. In a way, it looks like his immature, young immune system is really stepping up to the challenge. His white cell count went up today. (7.4) That indicates that there is an active infection somewhere in his body and the white cells are preparing for a fight. However, the doctors are still not sure what it is that Matt's body is fighting. It can be a bacterial, fungal or viral infection, most probably located somewhere in his GI tract.

Today's test was an abdominal ultrasound that examined his liver (normal), his gallbladder (normal), and his pancreas (normal). This was good news. The blood cultures from yesterday all indicated that there is no sign of infection in the blood - like sepsis. That is good. But why the fevers and the nausea? That is the question.

Matt spiked a fever tonight of 105 degrees. This is dangerously high and scared me. It is the same kind of fever he had when he first got sick. After a tepid bath and some tylenol, his fever is around 101. Thank God. Hopefully, we won't see that again. They must find the cause of this infection soon.

Tomorrow, Matt is scheduled for another round of tests which include a CT scan and perhaps, an endoscopy to collect a tissue sample. Another blood test was taken today to look for the CMV virus, a common culprit in transplant cases. It is a nasty virus that is very difficult to treat. However, it is best to know as soon as possible if he has it to give him the best chance of fighting it.

Please continue to pray for Matt and our entire family. He is strong but he has had to endure so much over the last 35 days. It is time for him to get a break. Please pray that they find an answer to his problem soon and that he gets back on the road to recovery.

 

Monday, June 10, 2002  Transplant Day +24

Matt continues to fight some kind of infection. The fevers raged last night and he (and I) had a pretty hard night. Matt also had quite a bit of belly pain and was vomiting bile. The doctors are concerned about this and feel that this indicates some kind of gastro infection going on. Blood cultures continue to remain negative, which is good - no sign of sepsis. Matt will not be on the antibiotics for 48 hours until tomorrow evening so there might not be any improvement until then, if they have chosen the right antibiotic for whatever he has.

Matt received a CT scan of his sinuses today. He has some drainage and has been stuffy for weeks. There is a possibility that they could be infected. The CT results should help to unlock that mystery. The transplant docs consulted a gastroenterologist to help them understand Matt's GI symptoms. An interesting idea that one had was that this may be gallbladder trouble (stones) caused by being on Hyperale, the liquid nutrition, for so long. So tomorrow Matt will have a sonogram of his liver and gallbladder. (he may be following in my footsteps with the gallbladder thing). If they find stones, he could be in for surgery.

So that is the Matt report. I am home this evening. I needed sleep. which I have been unable to obtain in two nights at the hospital. David wanted to spend some time with Matt too. They are coping well as David learns just where Matt wants his tray table and how to run the bath water perfectly. I needed to be here with the other children. I miss hugging them and just talking to them. We will learn more tomorrow about Matt's progress in this marathon. Thanks to Mary Birks for putting it so well in the guestbook. I guess we are further than we thought. We have hit the "wall" of our marathon. We will get past it. Matt will triumph. Good night...zzzzz

- Noelle

 

Sunday, June 09, 2002  Transplant Day+23

WBC - 4.7 (normal 4 - 10) HCT - 10.8 (good) Platelets - 59,000 (normal 150,000 - 450,000) * might need more tomorrow ANC - 3901 (normal >1000)

The road gets bumpy once again. I am sad to report that Matt spiked a fever and had a pretty rough night last night. He is having a lot of draining and stuffiness in his head, accompanied by a headache and nausea. Once the fever spiked, the docs thought that perhaps, he has a sinus infection. A sinus infection in the rest of us is mostly a nusiance, but a sinus infection in a severely immunocomprimised (how do you like that word?) person is serious. If he does not have a sinus infection, then the inflammation in his colon could be turning into an infection.

Either one of those conditions warranted a whole army of folks in our room last night drawing blood cultures, taking blood pressure and temps, passing meds and hooking him up to previously unhooked IV's. The bottom line is that whenever a BMT patient spikes a fever, the world of 8N responds.

In the last few hours, Matt has had an xray of the chest to rule out pneumonia (it wasn't - yeah!), cultures of his sinuses, cultures of his blood, cultures of his urine, more bloodwork and a host of other tests. The doctors have put him on the old standard antibiotic, Vancomyacin, as well as a new one, Timentin, to handle the possible GI causes. There is a distinct possibility that there is no infection and in 48 hours, if no bacteria shows up in his blood cultures, he will be taken off these antibiotics. If something does show up (like the E-coli from Day +2), then Matt will have to complete a course of these powerful IV antibiotics.

What does this mean for us? Well, our plans to come home are certainly on hold. If nothing does surface, then perhaps, we will be able to come home at the end of the week. If not, we are probably facing a couple more weeks in here. I am very sad about this but it is the right decision for Matt and his weak body. They are much better here, than I am at home, taking care of him under these circumstances and I keep thinking that, had we been home last night, it would have certainly been ANOTHER Saturday night trip to the Children's ER (which is no place for an immunocomprimised person). Bottom line: This is the best place for Matt right now and the rest of us will just have to get over it!

Please pray that the blood cultures do not produce any bacteria and if they do, that the doctors have, once again, ordered the "right combination" of antibiotics. Pray for the doctors and nurses who are doing such a great job taking care of Matt (and me!). Pray for David and the rest of the family at home - that we all can get the strength we need to help Matt complete the "marathon." This is just another bit of "cracked pavement" along the way.

- Noelle

 

Saturday, June 08, 2002  Transplant Day +22

Matt's CAT scan results are back. He has an inflamation of the descending colon and perirectal wall. This is not bad news at all. All it suggests is that he is still battling with mucositis. The good news is that the test for CMV virus to this area came back negative. This is a tough virus and if he had it in this area, it is not a good thing. He also has tested negative for the C-DIff bacteria, something he had earlier in the year and is particularly nasty to get rid of. He still has no fever and has excellent counts. So...what does all this mean?

He still has gastro pain off and on and for this, he is still able to use his pain medications. Tomorrow, he will be off all IV pain meds, so they will switch him to oral meds, if necessary. He still has some nausea and vomiting but very infrequently at this point. He is receiving platelets right now.

We will talk to his transplant doctor on Monday to see whether any of this will set him back from going home on Wednesday. If he keeps making improvements, it should not. If however, his gastro pain get worse, the next test for him is a colonoscopy. As a frequent recipient of such tests, I can tell you that I hope he does not have to undergo this invasive procedure. However, if that is what is necessary to diagnose the cause of his pain and nausea, then they will have to do it. Please pray he does not have to undergo this test.

We are so grateful for all of your thoughts and prayers. We are very excited to come home. It is very difficult, especially for me, to sit in this room on gorgeous days like today. I know that sitting on the patio at home would do both of us worlds of good. I also know that I don't want to bring Matt home and have to run right back to the hospital. So we will see what Monday brings.

- Noelle

 

Friday, June 07, 2002  Transplant Day+21

The roller coaster continues. Matt had a terrible night last night and not so great a day today. His counts are still good:

WBC - 20.2 (Neupogen induced this high!) HGB - 12.5 Platelets - 32 (got a transfusion today) ANC - 19,190 (WOW!!!)

Matt developed some gastro pain last night accompanied by some nausea and vomiting. It kept him up most of the night. In the morning, he continued to have pain and so the doctors decided to get a CAT scan of his abdomen, some bloodwork and some tests.

After waiting all afternoon, Matt finally had the tests and we just got the results back. They were negative for all the "bad" things that they were looking for. They still suspect that the mucositis could be casuing the pain in the abdomen. The good thing is that around 7:00, Matt started feeling much better, the pain disappeared and he even got up and walked around the unit!

So, the roller coaster continues. Matt has been feeling so well and hopefully, today was just a little "bump" in the road. We certainly hope and pray that this is the case. More tomorrow when we get the CAT scan results.

- Noelle

 

Thursday, June 06, 2002  Transplant Day+20

Wow! Matt is 1/5 of the way toward 100 days today! It seems like we got here so fast and yet it seems like we have so far to go. Matt's counts dropped today. They are:

WBC - 3.1 (normal 4 -10) HCT - 10.7 (A nice bump up from the transfusion yesterday!) ANC - 806 (normal >1000 - This fell -they will start Neupogen again) Platelets - 55 (stayed up)

The drop is to be expected and Matt will most likely need one or two shots of Neupogen each week for awhile to keep the counts up. We have to be more careful now that his ANC has fallen below 1000. He had a good day today - spent most of it awake, which is a change. He did laps around the unit this morning and this afternoon, returned to physical therapy to complete some excercises, work out on the bike, and climb some steps. David took a half day off and spent the afternoon with Matt while I got away for a break. I spent the evening at home with the kids, got pizza for dinner and took them out for ice cream. It felt so good to do some "normal" things again.

Matt has been throwing up a little each day and his doctors were concerned about it, so they did some xrays and ran additional bloodwork. Everything came back ok so they think that the mucositis is still present throughout his intestines. Poor kid - he has not eaten a single thing in over a month! The good news is that because he is on TPN (Total Parental Nutrition) he has not lost an ounce! Amazing.

We are preparing the house for Matt's homecoming. Some friends will help me on Monday clean the entire house and disinfect it. I have carpet cleaners, roofers, air conditioning men - you name it - coming to get it in shape. What a homecoming we will have. The potential day is Wednesday but we will know more on Monday. Stay tuned.

- Noelle

 

Wednesday, June 05, 2002  Transplant Day+19

WBC - 3.2 (normal 4 -10) HGB - 7.7 * Matt received a red blood cell transfusion today ANC - 1536 (normal >1000) Platelets - 56 (stayed up - a good sign!)

Matt had a good day - he slept most of it! He spends almost 18 hours a day sleeping. It is hard to believe that he can sleep so much. His body needs the sleep so that it can be busy rebuilding and regenerating cells. When he is not sleeping, he does physical therapy, walks around the unit, takes a bath and watches ESPN.

The doctors are starting to talk about "going home." It is scary for both of us. It would be nice to go home and be done with everything, but going home is not the "end" of treatment. Matt still has to come to the clinic three times a week, he must have his second catheter removed and he will have to have some follow up radiation to his neck, which the doctors want to do as an insurance against the disease recurring in the area where it first started. So, the end is not as close as we hoped.

A friend remarked today, that Matt's battle has been like running a marathon. He prepared for it, trained for it and started the race. It is a long race, and in order to win, a person must build endurance. Matt has reached about Mile 15 of the race. He has had some setbacks, some falls along the way, and some bumps in the road. However, he is on course and slowly, steadily, he will win through endurance. We must remember, though, that just because he is going home, the race is far from over. He still has the next 11 miles to go!

Matt will spend the next few days trying to eat something and weaning off the pain medication. If he can do these two things, then we should be going home in the early part of next week. This is what we are working toward.

- Noelle

 

Tuesday, June 04, 2002  Transplant Day+18

Matt's counts are great. They are:

WBC - 3.3 (normal 4 -10) * This has fallen back because neupogen was stopped HGB - 8.4 ANC - 1617 (normal >1000) Platelets - 57 (good jump due to a transfusion yesterday)

We have been in the hospital almost one month. Matt continues to make excellent progress. The doctors are pleased and I am thrilled to see him getting better every day. The nurses all say he looks great. He really has come a long way. He does physical therapy twice a day and yesterday he walked 17 laps around the unit. I commented to the doctors that 17 laps probably equals the distance from Matt's room to the parking garage - hint, hint!

Today, Matt will leave the unit for the first time since early May. He will go to the physical therapy gym to work on some equipment. This is a very big step for him and will provide a much needed change of scenery. Karen, the PT, is very good with Matt and knows how to get the most out of him. Yesterday she worked on his arm strength, and getting that "pitching" arm back to work.

Matt's mouth continues to be his source of pain. The sores are healing nicely but it will take a few more days until they are completely healed. When they are healed, he will be able to start eating. He is drinking up a storm, which is a good start. I wish he would eat a whole plate of steak and crab legs right now. It would do my heart good to see that!

David and the other kids are keeping things together at home, trying to adjust to Aunt Chris' departure. She sure made things easy for them. They really miss her and so do I. Our continued thanks to all of you who are helping us by running errands, taking care of the kids, cooking meals and visiting us in the hospital. We could not do it without all of you.

- Noelle

 

Sunday, June 02, 2002  Transplant Day +16

Not much more to report today. Matt continues to improve. I kept David's update on the site because it is such a good reflection on this whole ordeal. I want everyone to see it. They discontinued Matt's Neupogen today. His counts will normalize in the next couple of days and we will see what his WBC is then. He has increased his walking time and is drinking tons of fluids! His skin is improving. No one has mentioned a date yet for coming home but i hope to discuss that tomorrow with the doctor!

A great thing happened tonight - a couple of kids from the Mt. Lebanon High School Championship Baseball team stopped at our house to give Matt a hat signed by the entire team! What a treat! He will treasure that hat. Thanks guys! More tomorrow...

- Noelle

 

Saturday, June 1 Transplant Day +15

I think Matt's got more white blood cells then he knows what to do with! His ANC (the disease fighting WBCs) are now over 10,000, with the normal range of 4,000-8,000. Most of these are immature cells, and most are due to the Neupogen he gets daily that stimulates their production. Still, the fact that his marrow is producing so well is good news.

The mouth is looking much better but is still painful. He is now drinking water regularly which is a good start. Next we move on to juice, Gatorade, or whatever he wants and then onto solid foods. He is doing more physical activities each day so the end of this hospital stay is in sight.

He is tired of being here now and tired of the pain - he is cranky at times! Of course, the morphine is not helping as it makes him agitated and have mood swings.

It's a relief to know that this battle appears to be won, but we still have a ways to go to win the war. Once home (which I think is going to be a hard transition for all of us), we will need to be very careful with respect to infections until 100 days past the transplant (we are at day +15 now). That won't make a fun summer for Matt - no McDonalds, no swimming (maybe they'll take his central line out before the end of summer so he will get to?), no large group of friends, no Kennywood... He'll also be pretty fatigued. We've heard that it can take months and even years to overcome the fatigue due to a bone marrow transplant. It's hard to believe that they basically killed him and brought him back to life... what his body has been through!

Once the 100 days is past, he can start easing into a more normal life. Unfortunately, that "normal life" will not include school. His immune system is shot, so he no longer carries antibodies to anything and will need to get all his immunizations all over again. School is too much of a breeding ground for every and any infection out there. Most kids are immune and have the antibodies to fight them, so its no big deal for them but not for a BMT kid. He'll probably be back to school in January, or so they are telling us.

The war cannot be declared victorious until he goes cancer-free, basically after 5 years. He'll be getting scans and tests regularly - weekly at first, then monthly, then bi-yearly, then yearly. We'll always live with that threat hanging over us...

Well, enough looking into the future. We'll just keep concentrating on this battle, this day, and tomorrow will come on its own.

- David

 

Saturday, June 01, 2002  Transplant Day +15

I think Matt's got more white blood cells then he knows what to do with! His ANC (the disease fighting WBCs) are now over 10,000, with the normal range of 4,000-8,000. Most of these are immature cells, and most are due to the Neupogen he gets daily that stimulates their production. Still, the fact that his marrow is producing so well is good news.

The mouth is looking much better but is still painful. He is now drinking water regularly which is a good start. Next we move on to juice, Gatorade, or whatever he wants and then onto solid foods. He is doing more physical activities each day so the end of this hospital stay is in sight.

He is tired of being here now and tired of the pain - he is cranky at times! Of course, the morphine is not helping as it makes him agitated and have mood swings.

It's a relief to know that this battle appears to be won, but we still have a ways to go to win the war. Once home (which I think is going to be a hard transition for all of us), we will need to be very careful with respect to infections until 100 days past the transplant (we are at day +15 now). That won't make a fun summer for Matt - no McDonalds, no swimming (maybe they'll take his central line out before the end of summer so he will get to?), no large group of friends, no Kennywood... He'll also be pretty fatigued. We've heard that it can take months and even years to overcome the fatigue due to a bone marrow transplant. It's hard to believe that they basically killed him and brought him back to life... what his body has been through!

Once the 100 days is past, he can start easing into a more normal life. Unfortunately, that "normal life" will not include school. His immune system is shot, so he no longer carries antibodies to anything and will need to get all his immunizations all over again. School is too much of a breeding ground for every and any infection out there. Most kids are immune and have the antibodies to fight them, so its no big deal for them but not for a BMT kid. He'll probably be back to school in January, or so they are telling us.

The war cannot be declared victorious until he goes cancer-free, basically after 5 years. He'll be getting scans and tests regularly - weekly at first, then monthly, then bi-yearly, then yearly. We'll always live with that threat hanging over us...

Well, enough looking into the future. We'll just keep concentrating on this battle, this day, and tomorrow will come on its own.

- David

 

Friday, May 31, 2002  Transplant Day+14

Matt's counts continue to improve. The doctors are encouraged by his progress. They have decided to discontinue most of his antibiotics. They are cutting down on his IV nutrition too. The goal is to get him to want to eat and drink. He does want to drink but his mouth is still very sore from the mucositis. Hopefully, in a few days he will be eating and drinking something.

Matt walked 7 laps today around the unit. This is a great start. He is also working hard with the physical therapist to gain muscle strength. The next couple of weeks will be focused on getting Matt strong. In order to leave the unit, he must be able to walk out!

Matt and I had a visit today from those "funny ladies" as they are known on 8N. (Franci and friends) I got to go out to lunch - a real treat. Thanks to Becca for sitting with Matt while I got away.

I am home tonight, spending a last night with Aunt Chris. Matt was excited to spend a night with Dad - I think he is getting tired of me. Tomorrow I will take Aunt Chris to the airport and then back to the hospital for me.

- Noelle

 

Friday, May 31, 2002  Transplant Day +13

Sorry for the delayed update! The Caringbridge servers were down last night and I couldn't post an update. I am posting for yesterday. Matt had a great day, though. His counts:

WBC - 8.8 HGB - 8.8 Platelets - 14 *needed two transfusions today ANC - 7656

Matt's counts are actually good enough to come home. However, he is not strong enough and is still on pain meds. His goal is now to get off the medications and increase his strength. They are gradually weaning him from the dilaudid (painkiller) by reducing his dose each day by .5 ml. At that rate, he should be off the meds sometime next week. Physical therapy comes every day to help with the muscle tone and basics like walking and moving. Matt's skin is getting better each day. He does not look sunburned any more!

The family came in to visit Matt tonight. Anna had not seen him in over three weeks. She told everyone yesterday that she was going to see her brother. It was a nice visit but the commotion that is our usual family routine overwhelmed him and we cut the visit short. We have to work on getting him (and Mom!) used to this chaos again - the hospital is a pretty quiet place! I enjoyed seeing all of them.

Another weekend looms ahead. They are the worst in the hospital because the world virtually stands still. I will go home on Friday night to be with the children and see Chris, who is spending her last night at our home. She returns (boo hoo) to Mexico on Saturday. Her trip to North Carolina was safe and she is grateful to have been able to see her friend in such a time of need. Thanks for all your prayers!

Thanks for sending messages and emails too. I read every one of them and at times, they keep me going. Matt enjoys the messages on the web site. Thanks for the prayers, meals, childcare and for hanging in this with us. It is a long journey but Matt is winning the battle and in the end, that is all that matters!

- Noelle

 

Wednesday, May 29, 2002  Transplant Day+12

WBC - 7.5 (normal is 4 - 10) HGB - 9.9 (Normal >9) Platelets - 14 (Normal 150 - 400) * needed a platelet transfusion today ANC -5850 (Normal >1000)

Once again, Matt's counts almost doubled today! They are very good and the docs have allowed him to leave the room with a mask on if he would like to. However, he is so wiped out that he could only sit in a chair for about 1/2 hour today. That is a start, though! His skin looks much better and the mucositis is starting to heal. His tongue is not as sore today. The docs are starting to wean him off the painkillers and some of the antibiotics. Matt has not had a fever in two days. This is all really good news.

The goal now is to get Matt strong enough to come home. Yes, come home! It sounds so wonderful. As soon as he is able to get off the painkillers and the TPN (Total Perental Nutrition), he will be allowed to go home. So, it is up to Matt's body to get stronger each day. I know he is up to the challenge.

Physical therapy will be working with Matt to increase the strength in his legs and arms. One of his "homework" assignments is to walk around the unit once tonight. We will see if he can accomplish this task. It looks daunting now, but I bet he will be able to complete it.

Thanks for all the messages, cards and lottery tickets! Matt is having a ball with them! The local store owner thinks I have a pretty healthy habit going here because I turned in 10 winners today! Please continue to keep Matt and our family in your prayers. We appreciate all of them.

- Noelle

 

Tuesday, May 28, 2002  Transplant Day+11

WBC - 4.9 !!!! (Normal is 4 - 10) HGB - 9.6 (Normal >9) Platelets - 35 (Normal 150 - 400) ANC - 3332 (Normal >1000)

The counts are good. They are just about doubling every day. Matt's body is busy making cells. However, he is still in a lot of pain from the mucositis. Every day that goes by is a step in the right direction. His mouth looks better today. He is getting a lot of sleep thanks to the pain killers. Unfortunately, he is not getting much sleep at night. I think this is because he is getting his days and nights mixed up. We are working on this by trying to be a little more active in the days. He sat up in a chair for ten minutes today. This was a big accomplishment.

I got to leave for a couple of hours today and Aunt Chris came to stay with Matt. It did me a world of good to leave in the sunshine after spending all of Memorial Day in Matt's room. David and Megan also came to visit Matt tonight.

Thanks for all your prayers. They are so much appreciated. Please pray for Matt's continued healing, my strength, for David and the other children and for Aunt Chris. Please hold her in your prayers as she travels to North Carolina tomorrow, by car, to attend the funeral of a close friend's 15 year old daughter who was tragically killed in a quad accident. I know Chris' presence will bring some comfort to that family. She will return to us on Thursday evening. Thanks to all of you who are sending email, packages, letter, messages and food. We appreciate your support. Every day is a step towards Matt's new and bright future.

- Noelle

 

Monday, May 27, 2002  Transplant Day+10

Morning Update

MATT HAS CELLS!!! It is true...almost impossible to believe but Matt has a great count this morning. We have been hesitant to report the numbers until we knew if it was a trend or just a fluke. However, here they are:

5/25 WBC- .4 ANC- 44 (normal WBC is 4-10, normal ANC - >1000) 5/26 WBC- 1.0 ANC- 470 5/27 WBC- 2.7 ANC- 1917

These are really great numbers. Matt is on his way and his body has figured out what to do again. It is amazing.

Matt's pain is still bad although it is really only in his throat and mouth now. The abdominal pain has gone. In a few days, with these counts, his body should be able to repair the damage in his mouth and he should be feeling better. We both got some sleep last night. I know that really helps him.

Thanks to all for your prayers. The end of this is in sight now.

 

Sunday, May 26, 2002  Transplant Day +9

It's dad again. I have good news, the same news, and bad news tonight. The good news is that Matt had a great white blood count this morning and a really good neutrophil count (those white blood cells that fight infection). It appears that he has engrafted well and is now producing his own blood cells, but we need a couple more days like this to really know that we are on track.

The "same" news is that he continues to have severe mucositis and his mouth and throat in particular are causing him lots of pain. They again upped his Dilaudid dose (they switched from morphine which was causing him to itch like crazy!), but even so he requested a number of "rescue" doses (a little extra) throughout the day.

The bad news today was that he had a little tongue trouble. As the lining of his mouth sloughs off due to the chemo and radiation, so too did the top layer of his tongue... Good thing mom was not here, otherwise we all would be making trip to the adult ICU. ;^) Fortunately it did not cause him more pain than he already had but it did shake him up a bit. By the end of the evening he was back to his ornery self (yes, he is a teenager and he is getting better!) complaining if his sheets weren't positioned just so or we rubbed creme on his itch too hard.

Thanks to Chris and Lea Ann for planting the front flower bed! Thanks too to all who have been supplying me with dinner all these weeks - I've really enjoyed them!

Grow cells grow!!

 

Saturday, May 25, 2002  Transplant Day+8

Another sleepless night. I am not sure how many more of these we can take. Poor Matt got no rest last night. The medication he is on is making him fidgety. He can only rest for about 15 minutes at a time. His mucositis is severe now in his mouth and throat. His pain in the gut is almost gone. So one thing gets better and another gets worse. He really needs to rest.

We spent the morning sleeping, trying to make up for our night. If you tried to call, I apologize - I unplugged the phone to get some rest. My friend Lisa stopped by with great food for lunch and Matt was feeling good enough to watch a movie so we sat outside on the patio. How wonderful to see and feel the sun!

The docs think Matt is coming along great. He started the amphoteracin - B today, a medicine to prevent fungal infections. This is just a precaution because he is still running fevers. The nurse told me that he is now on every medication they ever use for transplant patients. This makes him quite a popular guy with the nurses. That is also the reason no one can get any rest - he receives meds around the clock.

Tomorrow should be the day. We are hoping that his counts will be on track tomorrow. Hopefully, I will have great news to report. Thanks for the cards and letters. The lottery tickets are so much fun and Matt is up to $100 in winnings. Not bad - I bet you all didn't realize you were so lucky! I am going home for a night's rest tonight. David and I figure that if we take turns, we won't get so worn out.

- Noelle

 

Friday, May 24, 2002  Transplant Day+7

Another day has passed here on 8N, our home away from home. Matt had a pretty good day in spite of his severe mucositis and his "burned" skin. He looks like he stayed out in the sun much too long. His face and eyes are puffy and red. His skin is very tender. This is to be expected since he received Total Body Irradiation (TBI) and a chemo drug that is secreted through the skin.

Matt is on many different meds. It is too much for even me to track. He sure keeps his nurses busy. I am hopping too just getting him things he needs and helping him with skin care and personal needs. I am not sure how am I coping. It is harder now than when he was in the ICU. I think, in a way, I am suffering from a type of Post Traumatic Stress Disorder. That is, he survived the scary part and so did I, but now that he is safe, I am crashing! It is hard, but I know he is getting better. He is much more talkative and interested in his surroundings.

I slept at home last night - thanks David - and I must say, I sure got some good sleep. I planned to take a bubble bath, have a glass of wine and talk to my favorite sister-in-law. However, all I did was pass out on the couch at 8:30!!! Oh well. I am back here with Matt tonight. He is watching TV, which is a good sign. I know our weekend will be quiet as most holiday weekends are. We are planning to spend our LAST holiday in this hospital on Monday. Hopefully, we will have a good report soon!

- Noelle

 

Thursday, May 23, 2002  Transplant Day +6

Matt is finally back on 8 North. We just arrived. We are so glad to be back. The nurses in the ICU were great but it was such a depressing place. Our room in the ICu was way in the back and it was very dark. Because Matt had to be in isolation, it was far from all the activity which just added to our feelings of isolation. Matt's pain comes and goes. He has waves of nausea and abdominal cramping. His fevers are still present but he really looks like he is improving. Each day is a step in the right direction.

Please continue to pray for Matt. I know that he will be ok and as each day passes, he will get a little stronger. I am going home to SLEEP tonight. David will be pulling hospital duty. I also want to see the other kids. I miss them so much.

- Noelle

 

Wednesday, May 22, 2002  Transplant Day+5

We are still heeere...Matt is still in ICU. It seems that once a unit gets a patient they love, they will NEVER let them go. The word is out - the nurses in ICU love Matt. They refuse to let the nurses on 8N have him back.

All kidding aside, Matt still needs to be monitored in a way that only the ICU can do. His blood pressure is still on the low side and he is still having fevers that cannot be attributed to any single bacteria. Even though he had e-coli earlier, they are certain that that bug is covered with the meds he is on. However, they are not so sure that he doesn't have some other bug. And so it goes. They must take blood cultures every 12 hours and see what grows. It is our hope that it is another bacteria. However, there is a possibility that he might have a fungal infection. This is not a good thing, but if caught early, which it would be at this point, it is ok because there is a medicine he can take.

The docs will wait until Friday to start him on the anti-fungal medicine. In the meantime, if his fevers go away or something else grows then he won't have to start that medicine. Matt is still in pain. He really wants to go back to 8N as well. It is a much brighter, cheerier environment and much more conducive to "healing." The ICU is no place for someone who acts as good as Matt. That is the problem - he looks and acts well but the numbers don't agree.

Please pray for my strength to get through this tough time. I am going on very little sleep. Also, pray for the family at home and for Aunt Chris and David to hold down the fort. Thanks for all your messages - I read each one of them to Matt. It is so isolating in that unit that we look forward to any communication from the "outside." Hope to have good news tomorrow, although that is beginning to sound old. Matt's counts are decent thanks to transfusions and hopefully, soon, we will see some cells! Grow cells, grow!

- Noelle

 

Tuesday, May 21, 2002  Transplant Day+4

Evening Update:

Matt's blood pressure has stabilized but he has a pretty high fever tonight. Please keep him in your prayers. They will also be giving him more blood and platelets tonight as his counts continue to be at bottom. He is in a lot of pain but is getting some relief from morphine and benedryl so that he can sleep. If he has a good night, we should be going to 8N in the morning.

Morning Update: Matt is still in the ICU. The doctors were preparing to transfer him to 8N when his blood pressure started to go down again and they decided to keep him at least another day. This is not a bad thing, it is just a precaution. If Matt gets to 8N and his blood pressure falls again, he will end up back in the ICU anyway. It is not good for him to be moved all over the place so the docs decided to give him one more day of "individual attention" to get him better. As his mother, I have no qualms about them deciding to provide another day of one-to-one care for my child. The ICU is very attentive to his needs.

However, we still really miss the staff on 8N and they miss him. Many have asked about him and seem to genuinely care about him. It is much more difficult for us to be in ICU. I am feeling very isolated. We are in a room to ourselves and it is a hassle for me to even go to the restroom. I only leave Matt between 7-8 am and 7-8 pm when the nurses have report. We are REQUIRED to leave then. Matt doesn't like it, but frankly, that is the only time we get to eat or take a break. He is getting used to it.

Matt is having a lot of belly pain. The mucositis has spread throughout his GI tract. They are trying to make him comfortable but he is still in pain. Hopefully, he will not remember a lot of this part. He has slept through quite a bit already.

Thanks for the cards and letters. Matt wakes up each afternoon to open them. I really appreciate all the email. While it is really difficult for me to respond, I am thrilled to hear from everyone. As I said, this is very isolating and I am looking forward to our return to a more "social" environment.

Hopefully, tomorrow will be the day. Actually, it will be when it is right for Matt. He will be able to tell the doctors and his body will show us that it is healing. In the meantime, all we can do is wait, hope and pray...

- Noelle

 

Monday, May 20, 2002  Transplant Day+3

Thanks to all for your prayers and messages. These have been two very tough days for us. Matt is finally stable and we will be going back to our "home" on 8N tomorrow if all goes well tonight. His blood pressure is stable now and had been throughout the day. They have removed most of the medicines that they used to stablize him and the last will be removed tomorrow morning. If all goes as planned, we will be transferred after that.

Matt has severe mucositis throughout his entire GI tract from the lining of his mouth, to the lining of his throat, all the way down through the GI tract. This mucositis enabled a normally harmless bacteria called E-Coli into his blood stream. Once in the blood, the bacteria multiply rapidly and cause a significant decrease in blood pressure. That is what happened yesterday to Matt. The good news is that the folks here know just what to do. They put him immediately on three different antibiotics, hoping that one would cover the type of bacteria even before they know what it is. They also used medicine called pressors, which help in increase blood pressure. Once again, the approach worked and Matt is getting better.

Matt still has no white blood count. This is expected, for it is early in the game. However, without a blood count and no ability to fight infection, he is really at risk. He is doing well, though. The ICU has been terrific. They monitor everything and a nurse is never more than a few feet away from him.

The down side to this is that neither Matt nor I can get sleep. Because they are so good at what they do, the ICU nurses rarely leave the patient alone and the lights are always on! So, we are looking forward to going back to our quiet room on 8N for some much needed rest.

Aunt Chris is a saint. She has been holding down the fort. Already Anna has figured out that when Aunt Chris is there, Mommy and Daddy disappear. She doesn't like that but Aunt Chris is doing a great job. Thanks to all who are sustaining us right now. The prayers, food, childcare, calls, emails etc. are really helpful.

Looking forward to updating tomorrow from, hopefully, 8N. God Bless.

- Noelle

 

Sunday, May 19, 2002  Transplant Day +2

Just a quick update (from Dad this time!). Matt has been in ICU since lunchtime today. After a bad night Saturday night, his blood pressure dropped to 80/20 sending him down to the ICU where they adminstered blood pressure medication to bring it back up, Fortunately it worked and he is stable and relatively calm and painfree (thanks to the morphine). They aren't sure what caused it since it could be due to many things: loss of fluids, reaction to the infection, ... Hopefully they will bring him back up to his room here on 8 North (where I will be spending the night) tomorrow once they wean him off the medication. He is battling some kind of an infection - it will take another 24 to 48 hours to determine what exactly it is - so he is on various antibiotics and Tylenol to keep the fever down. He is also showing signs of the mucositis (the breakdown of the lining of his mouth through his intestines due to the chemo) starting. All of this is to be expected, including the trip to the ICU.

So much for the medical update. Noelle is taking all this as well as one could expect, but it is tough to watch Matt go through all this, and seeing the ICU for the first time is unnerving in itself. The nurses have been great, and with Matt's neutropenia (i.e. no ability to fight infection), he is in isolation and we have a private nurse. Sitll, it's not "home" here on 8N. I left the kids just before lunch not knowing that'd I'd be gone all day and night (I'm trying to write this without my glasses and my contacts are in little cups!), so they are understandably not happy about their life also being turned topsy turvy. We are blessed to have Chris staying with us just for this kind of unexpected event! Thanks to MELB Greg for letting her help us!

A special thanks also to Lynn for bringing us dinner - it was an unexpected but much appreciated gesture! Thanks to all who continue to keep Matt and Noelle and the rest of us in prayer.

Dave

P.S. MELB = My-Ever-Lovin'-Brother

 

Saturday, May 18, 2002  Transplant Day +1

Evening Update:

Matt is very sick. They expected it and are reacting to it. His temperature has climbed to 102.2. He is now on two antibiotics, one antiviral med, an antifungal med, morphine around the clock, tylenol, neupogen to stimulate cell production and TPN for nutrition. He is pretty much sleeping through most of it and seems to be comfortable and out of pain. That is the important part. The doctors don't want his body doing anything other than making cells. They don't want him fighting infection or fever or pain.

The nurses are monitoring him closely. We have one of our favorites, Bridget tonight. Another of Matt's favorites, Amy took really good care of him today. He sure kept her jumping with all the meds. He is in very good hands. Please pray for him tonight. It will be a long night.

earlier this morning...

Counts: WBC - .1 (almost bottom) Platelets - 40,000 (normal 150 - 400,000) HGB - 8.0 (Transfusions begin at 7.5)

As expected, Matt's white count is pretty much at bottom. His platelets are ok so far and his hemoglobin (HGB) is falling. Matt had a very pain-filled night last night. He was asking for morphine almost every two and a half hours. He has developed severe mucositis (inflamation of the mucous membranes) in his throat. This is totally expected when receiving high-dose chemo and radiation. They will start Matt on a PCA (Patient-controlled Analgesic) pump today. That is a pump system which he can control. When he is in pain, he can simply push a button to receive a dose of medicine. He will probably get less medicine this way but be able to control it better. He cannot eat because of the phlegm in his throat so the doctor has ordered TPN (total parental nutrition) for him. This is nutrients through the IV. As the doctor explained it, they do not want his body to be looking for nutrients instead of working on getting better. This will give his body the ability to be at total rest. That is what he needs for the next few days.

In spite of all the pain, Matt really looks good! The doctor even said so. It is hard to believe that he is so sick. His temperature has started to go up a little and this will warrant the docs adding antibiotics soon to his array of medication.

The prayers are working! Please continue to pray for our strength. He had a very restful night in spite of his pain and I was able to get some much needed sleep. Thanks to my friend, Karen, who dropped off some "real food" for me. Thanks for all the meals at home, errands, childcare, etc. Keep thinking and praying - GROW.

- Noelle

 

Saturday, May 18, 2002  Transplant Day +1

Part 1

Counts: WBC - .1 (almost bottom) Platelets - 40,000 (normal 150 - 400,000) HGB - 8.0 (Transfusions begin at 7.5)

As expected, Matt's white count is pretty much at bottom. His platelets are ok so far and his hemoglobin (HGB) is falling. Matt had a very pain-filled night last night. He was asking for morphine almost every two and a half hours. He has developed severe mucositis (inflamation of the mucous membranes) in his throat. This is totally expected when receiving high-dose chemo and radiation. They will start Matt on a PCA (Patient-controlled Analgesic) pump today. That is a pump system which he can control. When he is in pain, he can simply push a button to receive a dose of medicine. He will probably get less medicine this way but be able to control it better.

He cannot eat because of the phlegm in his throat so the doctor has ordered TPN (total parental nutrition) for him. This is nutrients through the IV. As the doctor explained it, they do not want his body to be looking for nutrients instead of working on getting better. This will give his body the ability to be at total rest. That is what he needs for the next few days.

In spite of all the pain, Matt really looks good! The doctor even said so. It is hard to believe that he is so sick. His temperature has started to go up a little and this will warrant the docs adding antibiotics soon to his array of medication.

The prayers are working! Please continue to pray for our strength. He had a very restful night in spite of his pain and I was able to get some much needed sleep. Thanks to my friend, Karen, who dropped off some "real food" for me. Thanks for all the meals at home, errands, childcare, etc. Keep thinking and praying - GROW.

- Noelle

 

Friday, May 17, 2002  Transplant Day!!! Day 0

The big day has finally come and gone without any "surprises." That is such a great thing to report. Matt received his own stem cells - four bags of them - at 10:00 this morning. He was mildly sedated but still aware of what was going on around him. David, Megan and I were present along with Dr. Terszak, Tammi, the Physician's Assistant, Nurse Heather and Becca, the Child Life Therapist.

At about 10:15, Phil, the "keeper of the cells" walked into the room with an ice chest. From the chest he removed a very flat, frozen bag of Matt's stem cells. He put them into some warm water where they quickly thawed and then he transferred them to a large syringe. The syringe (containing about 50 cc of cells) was then injected by Dr. Terszak into Matt's catheter. Matt was hooked up to heart and oxygen monitors. The cells were slowly injected, taking about 10 minutes. This was repeated three times until all the cells were injected. Matt didn't flinch and his vital signs stayed stable. We all breathed a collective sigh of relief because I think many of the docs had expected that Matt, who reacts to many things, would react to the preservative in the cells. He did not and did extremely well throughout the procedure and the rest of the day.

Now the waiting begins. Matt's counts were pretty low today but they expect them to "bottom out" soon. He is extremely tired and in danger of infections without a mature immune system. However, they are prepared for whatever may arise.

Thanks to ALL of you who were praying at 10:00 this morning. Those prayers were felt by all of us in the room with Matt. OK, now all we have to do is think: GROW CELLS - GROW!!!

- Noelle

 

Thursday, May 16, 2002  Transplant Day-1

Well, it has finally arrived. The day we have all prepared for. Matt is ready to receive his new stem cells tomorrow. It is a really big day in our lives. He is doing just fine right now. He is resting and while he is extremely tired, they have been able to control his nausea today and he is actually nibbling on some food! David is with him at the hospital and I am at home with the other children.

Aunt Chris arrived safely and thanks go to Lea Ann who picked her up at the airport. The children are so excited to see her. So am I. The actual transplant will take place at 10:00 in the morning. Megan will stay home from school because she wants to be with Matt and he really wants her to be there. We will be leaving early in the morning for the hospital. Aunt Chris will run things at home.

There have been many wishes sent our way tonight. Thanks to everyone. Please say a prayer at 10:00 for Matt tomorrow. I know things will go well.

- Noelle

 

Wednesday, May 15, 2002  Transplant Day-2

Time is passing very quickly and at the same time when looking back over the past few days, it seems to have passed slowly. Matt continues to do very well in spite of receiving the TBI. He does seem to be getting more and more tired. Tonight, he is still somewhat nauseous and his appetite is starting to wane. However, his spirits are still high.

We got up very early this morning and went to radiation at 7:15. By 9:00 we were back in our room. Once again, the staff at Presby were great. Nurse Amy, over there, spent the time talking to me and keeping me calm. I like how gentle and caring they are with Matt.

My friend Lynn came to stay with us today. It really helps me to have someone to talk to. She also brought the best food I have ever tasted in the world (ok, it might not have been the best, but to someone who hasn't had home cooking in awhile it sure tasted good) from my friend, Franci. Thanks to both of you.

I talked to the Head of BMT today, Dr. Goyal. He stopped over to see us this afternoon. He is pleased at Matt's progress but warned us that the worst is yet to come and that the next week will be tough for Matt. Please pray for his strength to battle the infections, mouth sores, tiredness, pain and nausea. As soon as he starts showing signs of sickness, though, the staff will put him on painkillers. He will not have to be in any pain. Matt hopes he sleeps through the whole thing. I do too.

I will go home tomorrow to get a much needed night of rest and see the other children. Aunt Chris arrives too. David will get to be with Matt. God bless of all you. You are such a source of support to us. Thanks to all who wrote and told me they appreciated my Mother's Day entry. I am glad you liked it. It was from my heart.

- Noelle

 

Tuesday, May 14, 2002  Transplant Day -3

Today was the first day of Total Body Irradiation (TBI). Matt did very well but it was emotionally draining for me. It took us 15 minutes to walk to Presby to their radiation oncology department. Walking down the corridors was a very surreal experience. It almost played like a bad movie. When we arrived, the excellent staff took over and took good care of Matt. He had to lie very still on a hard bench for 10 minutes on each side. A huge machine aimed its beam at him and we all scrambled behind a lead wall to take cover. This was the hardest thing for me to do. All these years I have tried to protect him from all the little things and here I was letting him lay in the path of a monster of destruction. I can only pray it worked.

The rest of the day was spent on bathing (we are still doing 4 per day) and other routine tasks. It is hard to do anything else. The day becomes filled with these activities. Matt is a little tired and nauseous but they expect him to be. Tomorrow, he will receive two more doses of the radiation.

Thanks to our visitors today - Aunt Belle and Nancy. You cheered us up and I am sorry that we couldn't spend much time with you. Matt is so excited. He received several lottery tickets in the mail but two $2 tickets were expecially lucky! He won a total of $59 from those two tickets. Sure made his day! Thanks to all who sent them.

Please continue to pray for all of us. Matt has developed a cough that they think is related to sinus drainage. They plan to start him on Zithromax tomorrow. Please pray that it does not get any more serious than that. Blessings to all.

- Noelle

 

Monday, May 13, 2002  Transplant Day -4

Matt is done with chemo! We hope and pray that this is Matt's last dose EVER of chemo. He is such a trooper. He got through it with flying colors, as usual. He was able to tolerate most of it without getting sick.

The days are passing quickly, filled with medicine, new routines and anticipation. Tomorrow brings a new challenge for Matt. He will receive his first dose of Total Body Irradiation. I am more nervous about this than he is. The docs told him it will not hurt and that he probably won't get too sick from it right away. So, at 7:00 a.m., we will wheel him over to Presby for his first encounter with radiation. Please pray for both of us - that Matt has no problems with it and that I can relax and stay calm for him.

David and Megan came out today to see Matt. He lights up when she comes to see him. It is nice to see them get along so well. Noone can get him to do things better than Megan. I got to take a shower while they were here and David and I went downstairs for a coffee "date" to talk about things. It was nice to see them.

After a rough start, I am starting to feel more comfortable here. Our favorite nurses are back from a weekend off. It is amazing how much of a difference it makes when you have nurses who know your child, who know you and who take time out of their very busy scheduleds to give a comforting word. I am so thankful for them.

Thanks to everyone for pitching in to help us. It is amazing how people are showing up from all kinds of places to shop for us, cook for us, and take of the little things. I am also so grateful to have found a wonderful babysitter for the summer. Her name is Jen and she is a delight. We are all looking forward to Aunt Chris' arrival on Thursday, especially the kids at home. They need a "mom" to pamper them and to let them know they are loved. I know she will do that.

Thanks for your prayers - we are so lucky to have all of you pulling for Matt. Day by day, hour by hour, we are getting through this.

Sunday, May 12, 2002 at 08:02 PM (EDT) What a strange place to be on Mother's Day. I felt for all the mothers on this unit. It is sad to be spending another day in this hospital yet this day was very meaningful to me. I felt like I actually was doing all the things for Matt today that we do for our children on a daily basis - prepare food, clean up, do laundry, bathe them, etc. The difference is that I appreciated doing these small things for him in a way I never would or could before his illness.

He must take four baths a day to rid the skin of the toxic chemo drugs. I felt so lucky to be giving him those baths today. As I filled the water, I thought of all the times I filled a tub for him as a baby. I would carefully check the temperature of the water. I would be sure to have a warm room and warm towels. As I washed his skin, I would be sure to get in the creases and tried so hard to protect his delicate skin. I was priviledged today to share those baths with him. How many of us get to be close to our almost 13 year olds? How many of us get to spend an hour, four times a day in a quiet room with them? I felt like the care I gave Matt today was what being a mother is all about. I am blessed. Happy Mother's Day to all of you. I hope you got to spend some of this precious quality time with your children today.

- Noelle

 

Saturday, May 11, 2002 Transplant Day -6

Matt had a pretty uneventful day. The second high-dose chemo drug was started at 10:00 and I am happy to report he had no reactions to it. This is the drug which is excreted through the skin so Matt started taking baths in a special cleansing solution. He has to take four of these a day! So far, no extreme side effects other than he seems a bit more tired than usual.

Cards are starting to pour in and Matt is delighted. Thanks to all of you who sent them. They are cheering both of us up! He has received several from people on a lymphoma group from the internet and they are from places all over the world. It is nice to know how everyone is pulling for us.

Tomorrow is another day of Thiotepa. Four more baths. David will bring in the kids (minus Megan who is at a crew race in Detroit) to celebrate Mother's Day with me. I really miss them. Today, I got to go home and spend a few hours with Alex and Anna. I also got to see Alex pitch at his baseball game. He is so good. It was nice to be out among the "normal."

Please continue to pray for us. The prayers are working. We feel very peaceful and strong.

- Noelle

 

Friday, May 10, 2002  7 days until Matt's Transplant (Day -7)

Matt began his journey today. The first high-dose chemo drug was hung at 10:00 a.m. after a pretreatment regimen of several drugs to combat nausea. Matt did very well in spite of things. He did have a couple of his notorious "reactions" but the nurses were able to get his symptoms under control.

I was grateful to my friend, Barb, for coming to visit us. We took a walk around Oakland to pick up some things for Matt. It felt great to be outside. The rest of the day was very quiet. Matt spent most of it watching TV and sleeping.

Tomorrow, Matt starts a new drug called Thioteppa. Of course, until I see if he reacts to the new drug, I will be on pins and needles. I am really glad because Matt's own doctor, Dr. Wollman, is on rounds this weekend and we will see him. He knows Matt inside and out and can help if he needs some other medicines.

We are one step closer to the end of this long journey. Please keep us in your prayers. It is a very difficult time for us. We are trying to stay positive.

- Noelle

 

Thursday, May 09, 2002  Transplant Day -8

Today was a relatively easy day for Matt. He is still in some pain, but morphene is taking care of that! I want to clarify - yesterday Matt's surgery was to place a new catheter in his chest so that he will have four lines for the transplant. He did not have the transplant yet! I am sorry if I was not clear on that. The transplant will not happen until next Friday, May 17. Until then, he must undergo the "preparatory" regimen. This is the high dose chemo and radiation that kill the bone marrow.

Some have asked why the docs need to kill his bone marrow if it was "clean." The preparatory regimen (also called myleoblative therapy) is necessary because it is the high doses of chemo that are needed to destroy any cancer cells left in his body. However, when someone receives these high doses, there is no chance of their bone marrow regenerating on its own. Hence - the marrow must be "rescued" with his own stem cells. So, that rescue will take place next Friday after he has undergone a week of very harsh treatment.

The hardest part of the transplant are the two weeks after the actual cells are put back into him. This will be Days 0 - 14. These are the hardest because he will have virtually no immune system until the cells "engraft." Engraftment can happen any time from Day 7 - 14. This is a scary time. Many infections can develop although the docs are prepared with antibiotics just in case.

So, tomorrow begins Matt's journey to a cure for this awful disease. He will receive a 24 hour infusion of a chemo drug that he has had before in a very small amount. He is such a brave fighter. He is upbeat, positive and ready to do whatever they ask of him. I am not so sure if we are so brave. We need lots of prayer and support to get through these next few weeks. I know we can count on all of you.

- Noelle

 

Wednesday, May 08, 2002  TRANSPLANT DAY - 9

Matt's surgery was a success! He is still at the hospital, however, as he had a little more pain than expected. He also did not go into surgery until late in the afternoon and they would have had to keep us there until well past 8:00, only to return tomorrow morning. I am glad that he stayed because I wouldn't be able to control his pain at home. So, we moved to Plan B. David is with Matt at the hospital and I am at home, packing all the things we will need for the next few weeks.

We are in our "transplant" room - 8627. While it is not as big as the one I hoped for, it is the same room where we spent three weeks when Matt was first diagnosed. Tomorrow is an easy day for Matt - he will be hydrated all day and no chemo. Megan will be spending the day with him which he is excited about. Not much more to report. Thanks to all who helped us today. Coming home to a cooked meal today was so nice because we were unable to eat anything at the hospital. Also, thanks for the childcare for Anna and Alex that we were able to patch together on such short notice. We are blessed to have a support system.

- Noelle

 


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