Why can’t time stand still so I can get an update written?? I never thought I would be busier with chemo at home and Trip back in school part time, but I am!
Trip started school a week ago Monday. There have been tears and a few negotiation tactics on his part (“Mom, will you pick me up in three hours instead of four? How about three and a half?”). The teachers tell me he is doing great at school and now the tears aren’t as frequent.
Chemo at home was fairly easy. The noon and 6:00 p.m. pill taking was great. The midnight and early morning hours for pills were a little rough. Trip couldn’t wake up enough to swallow sufficiently. He eventually got them down, but was pretty upset by the end of the 8 pills and actually said he would just go to the hospital instead (he was obviously very tired).
Last weekend was rather busy with fun birthday parties. I’m not sure if it was the level of activity or chemo or both, but by Sunday Trip was exhausted. He slept all afternoon and was still in bed at a normal hour. We still aren’t sure what to expect with this maintenance phase. We will learn as we go as we have through this entire process. The doctors expect his counts to start rebounding now. This week his hemoglobin went up a bit, but is still well below the “normal” range.
The Make a Wish Foundation called and asked if we would like to go Disney this month! While we were excited and honored, we didn’t feel comfortable going since starting the new drug protocol, and we were concerned about Trip being in the sun and heat for prolonged periods.
The blessings I feel right now are louder than the worrying voice in the back of my head. I’m thankful for tears about school instead of the hospital. I’m thankful for chemo at home and for Trip’s willingness to do what is needed and expected of him. I’m thankful he is making friends in school and having more “normal” days. I’m thankful for you all for following our journey and most importantly showering us with love and support.
Wednesday, August 15, 2012
Thursday, July 26, 2012
The Unexpected
We are back in the hospital for observation. Dr. Appel felt we should do the first round of “at home” chemo in the hospital so she could be sure the toxicity levels don’t get too high in Trip because of his DI. (Methotrexate is processed through the kidneys and on DDAVP Trip doesn’t urinate as much as someone who produces his/her own vasopressin, so he might process the methotrexate at a slower rate).
On one hand I appreciate the cautious approach, but on the other hand I hated disappointing my son. Have I not already learned the lesson not to make him any promises associated with treatment for his disease? We’ve talked for weeks about how he won’t have to go into the hospital for chemo for the foreseeable future, so this was a big blow to him.
Last night he got into bed and I was telling him how much easier this hospital stay would be and he didn’t say a word. Tears just fell from his eyes but there were no sounds of crying. This morning was a different story. Trip had a complete meltdown in the floor begging me not to make him go. It turned into me holding him and crying on top of his tears. I tried to wipe the sadness away with a paper towel. He took that paper towel from me and angrily ripped it into pieces. I realized how much better that made him feel, so I gave him more paper towels and then Kleenex and then I joined in. We pretended these meaningless pieces of soft paper were LCH and we ripped them to shreds and told them to leave us alone. We even yelled at the LCH/bits of paper, “Get out of our lives you stupid LCH! Leave us alone!” (Stupid has been labeled a bad word at our house since we are preparing to go to school with other kids). The tears stopped and the anger subsided and then we were better. It was therapeutic for me, and I’m certain it was for him. Following his lead was enlightening.
Trip had to be accessed when we got here but only to make getting blood easier. He has no chemo bag or fluids. He doesn’t even have a pole to drag around, so the freedom has been a blessing if we have to be here. His first round of methotrexate was around 1:00 p.m. He had to swallow eight pills and did it like a champ! I am so proud of him. He will have another eight pills at 7:00 p.m., another eight at 1:00 a.m. and the last eight at 7:00 a.m. They will test his methotrexate levels two hours after every dose. If they are comparable levels to a person who doesn’t have DI, then we should be in the clear and will hopefully be home by noon tomorrow. We will have to come back on Saturday for the final 48-hour level check, but that should not be a lengthy process. We will leave here with a longer prescription list than we have had in over a year, but anything will be better than the hospital stays.
Trip feels good and people who haven’t seen him in awhile comment on how great he looks. I’m so thankful for his healing thus far, and I’m excited for him to go back to school. I’m hopeful there will soon be a semblance of normalcy for Trip, even though I realize there is no such thing as normal.
On one hand I appreciate the cautious approach, but on the other hand I hated disappointing my son. Have I not already learned the lesson not to make him any promises associated with treatment for his disease? We’ve talked for weeks about how he won’t have to go into the hospital for chemo for the foreseeable future, so this was a big blow to him.
Last night he got into bed and I was telling him how much easier this hospital stay would be and he didn’t say a word. Tears just fell from his eyes but there were no sounds of crying. This morning was a different story. Trip had a complete meltdown in the floor begging me not to make him go. It turned into me holding him and crying on top of his tears. I tried to wipe the sadness away with a paper towel. He took that paper towel from me and angrily ripped it into pieces. I realized how much better that made him feel, so I gave him more paper towels and then Kleenex and then I joined in. We pretended these meaningless pieces of soft paper were LCH and we ripped them to shreds and told them to leave us alone. We even yelled at the LCH/bits of paper, “Get out of our lives you stupid LCH! Leave us alone!” (Stupid has been labeled a bad word at our house since we are preparing to go to school with other kids). The tears stopped and the anger subsided and then we were better. It was therapeutic for me, and I’m certain it was for him. Following his lead was enlightening.
Trip had to be accessed when we got here but only to make getting blood easier. He has no chemo bag or fluids. He doesn’t even have a pole to drag around, so the freedom has been a blessing if we have to be here. His first round of methotrexate was around 1:00 p.m. He had to swallow eight pills and did it like a champ! I am so proud of him. He will have another eight pills at 7:00 p.m., another eight at 1:00 a.m. and the last eight at 7:00 a.m. They will test his methotrexate levels two hours after every dose. If they are comparable levels to a person who doesn’t have DI, then we should be in the clear and will hopefully be home by noon tomorrow. We will have to come back on Saturday for the final 48-hour level check, but that should not be a lengthy process. We will leave here with a longer prescription list than we have had in over a year, but anything will be better than the hospital stays.
Trip feels good and people who haven’t seen him in awhile comment on how great he looks. I’m so thankful for his healing thus far, and I’m excited for him to go back to school. I’m hopeful there will soon be a semblance of normalcy for Trip, even though I realize there is no such thing as normal.
Friday, July 20, 2012
Quick Update
Trip finished his last round of intravenous methotrexate last week. It was the last planned hospital stay. He threw up once and got a rash, but both events were short lived, thank goodness.
His hemoglobin is low again this week, so we are watching him closely in case he needs a blood transfusion. So far, he seems to feel great.
We go in for a follow up appointment on Tuesday and will get instructions on how to proceed with chemo at home. He will take 6MP daily and one round of methotrexate every two weeks. He will have to take methotrexate over a 24-hour period: 6:00 a.m., noon, 6:00 p.m. and midnight. We might start it either on Tuesday or wait until Friday to accommodate his upcoming school schedule.
I apologize for being such a slacker with updates. Life has been chaotic the last couple of weeks. I have many texts, emails and calls to return. I promise I’ll get to each of you. I appreciate your patience and support!
His hemoglobin is low again this week, so we are watching him closely in case he needs a blood transfusion. So far, he seems to feel great.
We go in for a follow up appointment on Tuesday and will get instructions on how to proceed with chemo at home. He will take 6MP daily and one round of methotrexate every two weeks. He will have to take methotrexate over a 24-hour period: 6:00 a.m., noon, 6:00 p.m. and midnight. We might start it either on Tuesday or wait until Friday to accommodate his upcoming school schedule.
I apologize for being such a slacker with updates. Life has been chaotic the last couple of weeks. I have many texts, emails and calls to return. I promise I’ll get to each of you. I appreciate your patience and support!
Friday, June 29, 2012
Onward and Upward
Trip finished chemo this week. He didn’t eat much at all this week due to some stomach issues. We still aren’t sure if it was the chemo or maybe a bug, but we think it’s all behind us now. We were discharged last night around 10:30. When we walked outside it was 92 degrees and humid. It felt like walking into a wall to me, but Trip took a deep breath and said, “Ahhh, feel that fresh air. It smells so good.” The little things appreciated by him remind me that life is all in the perspective.
We go back next week only for blood work and the following week for what we hope is his last intravenous round of chemo. The doctors gave us the green light for putting him back in school since his counts have been decent lately. We think it will be great for him to be around his own peers and to be in a “normal” setting again. We will start him part time until he builds up stamina. I’m sure there will be an adjustment period for all of us, but we are a little excited about it – even Trip.
Relief, thankfulness and fear are still the emotions surrounding me right now. I heard someone say this week that you can either worry or pray but why do both? One of my friends told me last week that worrying is like rocking in a rocking chair all day because it’s exhausting and doesn’t get you anywhere. I’m challenging myself with these thoughts in mind to leave the worrying behind.
I’m so thankful to everyone for their continued thoughts, prayers, words and acts of encouragement and support. I can’t imagine what this experience would be like without people in our lives showing us love and consideration. Much love and gratitude to all.
We go back next week only for blood work and the following week for what we hope is his last intravenous round of chemo. The doctors gave us the green light for putting him back in school since his counts have been decent lately. We think it will be great for him to be around his own peers and to be in a “normal” setting again. We will start him part time until he builds up stamina. I’m sure there will be an adjustment period for all of us, but we are a little excited about it – even Trip.
Relief, thankfulness and fear are still the emotions surrounding me right now. I heard someone say this week that you can either worry or pray but why do both? One of my friends told me last week that worrying is like rocking in a rocking chair all day because it’s exhausting and doesn’t get you anywhere. I’m challenging myself with these thoughts in mind to leave the worrying behind.
I’m so thankful to everyone for their continued thoughts, prayers, words and acts of encouragement and support. I can’t imagine what this experience would be like without people in our lives showing us love and consideration. Much love and gratitude to all.
Thursday, June 14, 2012
More Good News
Trip’s port works! They accessed him again today and were able to get the blood to drawback. They removed the IV in his arm, so he will finish getting his fluids through his port. As soon as he clears the methotrexate we will get to go home. The list of things to be thankful for continues to grow.
Wednesday, June 13, 2012
Thankful
“Overall, there is evidence of decreased manifestations of the patient’s Langerhans Cell Histiocytosis. The lesion involving the left maxillary is markedly smaller as is the lesion of the left mandible. The skull base lesion is stable though it does have a slightly elevated SUV. The lesions involving the feet have also almost completely resolved. The are not new foci of hypermetabolic activity identified.”
Good news, good news, good news!!!! The PET scan shows positive results! Methotrexate appears to be working! The doctors are very pleased and I’m following their lead. The area of concern is the skull (why couldn’t it have been a bone farther away from the brain?) since it has not changed in size and since the skull SUV is elevated since the last scan. The doctors have stopped short of telling me the SUV numbers are meaningless, but they have said we can’t put a lot of faith in the PET scan since it has only recently become a tool used in histiocytosis diagnosis. The confusion for me is that we are putting faith in it when it says the SUV numbers have decreased, so shouldn’t it work the other way? There is also the thought that “baby” cells trying to regrow the damaged area would light up on the scan also.
Our question of whether or not the damage around his orbital area is scar tissue still remains. Our doctor is considering a biopsy on the area. I feel like that is too invasive and unless it would change the course of treatment I’m not in favor of it. The plan right now is for Trip to have three more rounds of intravenous methotrexate so he will have a solid six months of this treatment under his belt. After that, assuming that everything is stable, we will move to an oral methotrexate at home. If there is a reactivation in less than a year, we will have to go to clofarabine. If Trip can go more than a year without a reactivation of disease, we could go back to methotrexate since we know that has worked for him.
We are in the hospital now getting chemo and have hit a bump in the road. Last night while sleeping the needle somehow became dislodged from Trip’s port, so methotrexate was going into the soft tissue surrounding is port instead of his blood stream. The methotrexate will take about a day to completely absorb into his body, but luckily, thankfully it is not one of the chemo drugs that could do long-term damage to his tissue. It is extremely painful for him, but in true Trip form he was a trooper telling jokes to the nurses in one breath and then crying and yelling in the next breath when he had to be accessed again. The next disappointment came when no there was no blood drawback from his newly accessed port. The fear is that the blood has clotted and the port will not longer be able to be used. They are trying to breakdown whatever is in there causing the blockage, but so far nothing has worked and everything put into the port has been very painful for Trip. This started around 5:00 a.m. today and by 8:00 a.m. he had his port accessed for the 2nd time in 24 hours and an IV in his arm in order to continue the chemo. The chemo has to be completed in 24 hours after beginning, so it was imperative to start it again quickly. Since chemo is the priority right now we will finish it tonight then focus on the port issue. The hope is tomorrow he can be accessed again (don’t tell him that) and he will be pain free and not so stingy with his blood. Otherwise, we are looking at surgery.
The lesson this week should have been a no-brainer as a parent, but we blew it… don’t give my kid something to look forward to without knowing for sure it is going to happen. With the good news we got from the PET scan, we decided to take Trip to the lake this weekend with friends. Even though he can’t even put a big toe into lake water, being out of town for a change of scenery with friends was going to be a big deal for all of us. He has been so excited and it’s one thing we keep talking about when things get painful around here. Now, with the port issue I’m not sure we will get to go. I can’t stand the idea of breaking his heart, but hopefully I can distract him by taking him to Toys R Us for anything he wants. (I folded like a cheap lawn chair in the early morning hours seeing tears stream down his face while being poked and prodded on and promised him the sun and the moon.)
I feel relief. I feel gratitude. I feel blessed. I am still confused, exhausted and worried, but overall the breaths I’m taking today are easier than the ones I took yesterday. Thank you to all prayer warriors/positive energy contributors/love providers. You all have made a difference and we are so very thankful.
Good news, good news, good news!!!! The PET scan shows positive results! Methotrexate appears to be working! The doctors are very pleased and I’m following their lead. The area of concern is the skull (why couldn’t it have been a bone farther away from the brain?) since it has not changed in size and since the skull SUV is elevated since the last scan. The doctors have stopped short of telling me the SUV numbers are meaningless, but they have said we can’t put a lot of faith in the PET scan since it has only recently become a tool used in histiocytosis diagnosis. The confusion for me is that we are putting faith in it when it says the SUV numbers have decreased, so shouldn’t it work the other way? There is also the thought that “baby” cells trying to regrow the damaged area would light up on the scan also.
Our question of whether or not the damage around his orbital area is scar tissue still remains. Our doctor is considering a biopsy on the area. I feel like that is too invasive and unless it would change the course of treatment I’m not in favor of it. The plan right now is for Trip to have three more rounds of intravenous methotrexate so he will have a solid six months of this treatment under his belt. After that, assuming that everything is stable, we will move to an oral methotrexate at home. If there is a reactivation in less than a year, we will have to go to clofarabine. If Trip can go more than a year without a reactivation of disease, we could go back to methotrexate since we know that has worked for him.
We are in the hospital now getting chemo and have hit a bump in the road. Last night while sleeping the needle somehow became dislodged from Trip’s port, so methotrexate was going into the soft tissue surrounding is port instead of his blood stream. The methotrexate will take about a day to completely absorb into his body, but luckily, thankfully it is not one of the chemo drugs that could do long-term damage to his tissue. It is extremely painful for him, but in true Trip form he was a trooper telling jokes to the nurses in one breath and then crying and yelling in the next breath when he had to be accessed again. The next disappointment came when no there was no blood drawback from his newly accessed port. The fear is that the blood has clotted and the port will not longer be able to be used. They are trying to breakdown whatever is in there causing the blockage, but so far nothing has worked and everything put into the port has been very painful for Trip. This started around 5:00 a.m. today and by 8:00 a.m. he had his port accessed for the 2nd time in 24 hours and an IV in his arm in order to continue the chemo. The chemo has to be completed in 24 hours after beginning, so it was imperative to start it again quickly. Since chemo is the priority right now we will finish it tonight then focus on the port issue. The hope is tomorrow he can be accessed again (don’t tell him that) and he will be pain free and not so stingy with his blood. Otherwise, we are looking at surgery.
The lesson this week should have been a no-brainer as a parent, but we blew it… don’t give my kid something to look forward to without knowing for sure it is going to happen. With the good news we got from the PET scan, we decided to take Trip to the lake this weekend with friends. Even though he can’t even put a big toe into lake water, being out of town for a change of scenery with friends was going to be a big deal for all of us. He has been so excited and it’s one thing we keep talking about when things get painful around here. Now, with the port issue I’m not sure we will get to go. I can’t stand the idea of breaking his heart, but hopefully I can distract him by taking him to Toys R Us for anything he wants. (I folded like a cheap lawn chair in the early morning hours seeing tears stream down his face while being poked and prodded on and promised him the sun and the moon.)
I feel relief. I feel gratitude. I feel blessed. I am still confused, exhausted and worried, but overall the breaths I’m taking today are easier than the ones I took yesterday. Thank you to all prayer warriors/positive energy contributors/love providers. You all have made a difference and we are so very thankful.
Wednesday, June 6, 2012
3 P’s: PET, Puke, and Positivity
Trip’s PET scan was finally today. It started at 1:00 p.m. so it was harder on him than usual due to the amount of time he realized he was without food. I woke up this morning with a flood of memories from a year ago when his MRI revealed the disease had spread. I tried to push those fear images aside and visualize only the love that is surrounding Trip. This disease cannot penetrate love and that thought comforts me when fear creeps in.
Trip was a trooper as always but had a rough time waking up from anesthesia. It’s not uncommon, but it certainly isn’t something we are accustomed to seeing with Trip. He couldn’t stop crying and couldn’t be consoled. The crying on stop of the hard sleep combined with the orbital mass made his eye bulge more than we’ve seen before. That was unsettling but explainable since we know the mass is still there.
Once we got home, Trip ate dinner and a cupcake (his usual reward for a hard day of not getting to eat or drink). We snuggled on the couch and played a little. After breaking through and drinking a little more than his normal fluid intake, he began to complain of a tummy ache. I halfway listened to him since he can be a bit dramatic at times but eventually forced him to take Zofran. As soon as he gagged on the Zofran, he projectile vomited all over the kitchen counter… four times. He said he felt better and also said that I should listen better next time. I’m hopeful it’s not going to be the “persistent” vomiting that they warned us about after anesthesia, but so far just the one time in the last hour. I’m on alert until I’m certain though.
In his own way, Trip has reminded me of the importance of positive thinking. His glass half-full approach has alerted me that suddenly my glass is half-empty. In effort to keep Trip from being disappointed at times, I try to prepare him by asking him questions like, “What if they don’t have the book you want to read?” and “What if Kroger doesn’t have any small shopping carts?” His usual response is, “What if they do?” For a long time I took this as him being combative until we were in the hospital last weekend waiting to go home. We were delayed getting discharged again, so I began to think we might have to stay another night. I wanted to prepare him and asked, “What if we don’t get to go home tonight?” and he looked me dead in the eye and said sternly, “What if we do get to go home?” It shocked me a little because I realized how right he is to think the positive way he is thinking. Who am I to squash his innocent view of the good that can happen? I can’t keep him from having his share (or possibly more than his share) of disappointment in life. Instead, I hope to help him believe he can handle whatever disappointment he does face.
That lesson was big for me today especially. When the fear thoughts came in this morning of not getting news we want from today’s scan, I turned my what-if thought into one of Trip’s what-if thoughts… “What if this scan shows the disease has progressed again?” was pushed out of my mind with “What if this scan shows no active disease?” Part of me is still in protective mode and doesn’t want to get my hopes up too high, so this lesson is a work in progress as many of my lessons are. We should get the PET results on Tuesday. Whatever news we get, I can handle it.
Trip was a trooper as always but had a rough time waking up from anesthesia. It’s not uncommon, but it certainly isn’t something we are accustomed to seeing with Trip. He couldn’t stop crying and couldn’t be consoled. The crying on stop of the hard sleep combined with the orbital mass made his eye bulge more than we’ve seen before. That was unsettling but explainable since we know the mass is still there.
Once we got home, Trip ate dinner and a cupcake (his usual reward for a hard day of not getting to eat or drink). We snuggled on the couch and played a little. After breaking through and drinking a little more than his normal fluid intake, he began to complain of a tummy ache. I halfway listened to him since he can be a bit dramatic at times but eventually forced him to take Zofran. As soon as he gagged on the Zofran, he projectile vomited all over the kitchen counter… four times. He said he felt better and also said that I should listen better next time. I’m hopeful it’s not going to be the “persistent” vomiting that they warned us about after anesthesia, but so far just the one time in the last hour. I’m on alert until I’m certain though.
In his own way, Trip has reminded me of the importance of positive thinking. His glass half-full approach has alerted me that suddenly my glass is half-empty. In effort to keep Trip from being disappointed at times, I try to prepare him by asking him questions like, “What if they don’t have the book you want to read?” and “What if Kroger doesn’t have any small shopping carts?” His usual response is, “What if they do?” For a long time I took this as him being combative until we were in the hospital last weekend waiting to go home. We were delayed getting discharged again, so I began to think we might have to stay another night. I wanted to prepare him and asked, “What if we don’t get to go home tonight?” and he looked me dead in the eye and said sternly, “What if we do get to go home?” It shocked me a little because I realized how right he is to think the positive way he is thinking. Who am I to squash his innocent view of the good that can happen? I can’t keep him from having his share (or possibly more than his share) of disappointment in life. Instead, I hope to help him believe he can handle whatever disappointment he does face.
That lesson was big for me today especially. When the fear thoughts came in this morning of not getting news we want from today’s scan, I turned my what-if thought into one of Trip’s what-if thoughts… “What if this scan shows the disease has progressed again?” was pushed out of my mind with “What if this scan shows no active disease?” Part of me is still in protective mode and doesn’t want to get my hopes up too high, so this lesson is a work in progress as many of my lessons are. We should get the PET results on Tuesday. Whatever news we get, I can handle it.
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