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Update and Thanksgiving

25 Nov

Update on Lenox and the Leukemiasaurus:
Last week was a bit tough for several reasons – first, Lenox started getting her first mouth sores. We have been hoping that this might skip Lenox as they are quite painful, but last Friday night she started telling us how much her boo-boos hurt in her mouth. We checked it out with a mini- flashlight and sure enough she had several sores. It is actually surprising that she did not get them sooner as they seem to be a prevalent side effect for high dose methotrexate. We got her on a”magic” mouthwash, which has Benadryl, lidocaine and Maalox and the few times she used it seemed to help. Because of the mouth sores, we couldn’t keep doing her evening chemo meds with OJ so had to find an alternate medium. OMG, this one small change wreaked havoc. Lenox was so adamantly against doing any other drink that for the last 3 to 4 nights giving meds has gone back to a 2 hour crying, pleading, cajoling UTTERLY DRAINING experience. It brought Lenox and I both to tears.

The other tough part was her clinic visit this week. What should have been a fairly routine visit was very hard because Lenox really fought getting her port accessed, screaming, gasping, crying and pleading “mommy stop, mommy noooo”. And then after she was accessed, to exacerbate things, she flailed so hard she yanked the access line right out. Meaning we had to reaccess her. I was in tears for this too – trying hard to not let Lenox see me. Once we finally had her re- accessed we struggled a bit with an allergic (or at least dramatic 🙂 ) reaction to a med she received.
Overall, Our little turkey is a bit thinner – she seems to be losing about a half pound to a pound a week over the last few weeks, but she still has great energy and seems to be feeling good! Her cousins, Grace and Michaela, came and stayed with us from Saturday to today so were a wonderful blessing of companionship and help for all 3 of us, especially for keeping Lenox’s mind off the mouth sores.

Boston Thanksgiving: In spite of what it might seem from the update above and our rough week, Liz and I are more aware and thankful than ever for so many things…

For having had the most amazing blessing of a daughter born 3 1/2 years ago and having that time to watch her become herself and be her world to her;

For every kiss, giggle, tear, boo-boo, letter learned, tantrum thrown, and tenderness she has shown;

For having the “good” leukemia, for not having terrible side effects to chemo, and for mostly having had great blood counts through her treatment;

For Lenox’s bravery and courage and fortitude and for her ability to end a lousy day with the words “I am happy Mommy and LaLa.”

For the wonderful doctors, nurses, and medical team right here in our neighborhood who make having a cancer kid so much more bearable and understandable;

For having good insurance, wonderful employers, great friends and amazing supportive neighbors;

For Lenox having such a warm and embracing school community;

For our steadfast families who have laughed and cried with us through this and whose support we couldn’t get through this without;

For each other as partners to get through the tough days and celebrate the good days;

And most importantly we are thankful for having the confidence and faith it takes for us to believe without a doubt that Lenox will survive this and thrive!

Happy Thanksgiving Everyone!

November – lots of tidbits and News

17 Nov

Lenox Slaying the Leukemiasaurus: Yeah! We are on the tail end of hospital visit 5 – one more left before Consolidation phase ends! Lenox is hanging tough; she had vegged out a good bit, had a good time in the playroom and painting and been watching Deathly Hallows II. Yesterday one of the Child Life Specialists took us down to a special play room used for medical play and trainings. It has an ambulance, mock OR, all in kid size where they can role play, etc. Really neat set up and I think it was helpful in that it gave her another way to process her experiences without having to talk it out with an adult or having to be in the “patient” mode.

As some of you know, prior to Lenox’s leukemia diagnosis, We had been aware of, and starting some therapy for, Lenox having some vision problems and possible retained reflexes (attributed generally to neurological issues). They were nothing terrible and things she was doing a great job of compensating for, but that with therapy could make things easier for her. We mentioned this for the first time to the oncologist this week. She said that with most of their patients, because of some of the long term effects of the chemo drugs, they do a comprehensive nuero-psych assessment and then make appropriate referrals to work on things as they exist now, or arise, to hopefully limit or mitigate the nuero-psych impacts on her long term. So looks like we will do that in January and begin any prescribed treatments during the two-year Maintenance phase. We were relieved to hear they do such thorough front- end testing on this.

The last week or so I think Lenox really realized for the first time that her hair is short. She asked me about a week ago to put ponytails in her hair – and she wanted lots of them! My heart fell – did she think she had enough hair for that? If she didn’t know it really yet, should I tell her? She handed me these bigger hair bands we had used as her hair was longer. I persuaded her to at least use the teeny tiny bands we used when she was a baby. Even so, only two teeny little ponytails were possible. When she asked for more, I put her bangs up too. She cheerfully grinned in the mirror and showed off her hair to LaLa and didn’t seem phased at the time about having just 3 wee ponies. I didn’t bring it up further. But a few days later, out of the blue she said “it’s taking my hair so long to grow back” — I didn’t have the heart to tell her how long it will be short (and we don’t really know).

She also has thought far enough out into the future to have realized that at some point her implanted port will not be there. She has been asking a lot about when it will come out and how it would be taken out. I think she was realizing that to get something out that is under her skin, we will have to cut her skin. So we had to explain that at some point – maybe when she is 6 yo – we will have a surgery and described it a little. We pointed out the scar where they had made a “pocket” when they put it in and that she had been fully asleep. We said later it would be the same – she would be deep asleep where she wouldn’t feel anything and they would just use the pocket again to take it out. So stoic as she just listened and then sat quietly thinking about our answer. I am certain this will come up more.

We have been doing lots of great fall / turkey arts and crafts and made gingerbread dinos the other day. Lenox has also gotten very into wanting to learn to read. We bought her the first set of Bob books and she has read the first two! She loves to sit in front of books on her own and re-tell the story from memory and say she is reading by herself. We have been getting ready for Christmas a little by planting the seed that an elf is coming this year. We bought an Elf on the Shelf and will start it up the day after Thanksgiving. She is excited. She has also taken a stack of flags and a sharpie and is very methodically reviewing the catalogs that come in the mail – flagging pages and circling items. I have to say that while I am sure this is teaching some lessons we shouldn’t be encouraging, I was surprised to see her being very thoughtful and contemplative – flipping between pages and picking only her most preferred. She would take some flags off as she found others she liked better. I like that she somewhat naturally has created some type of limit!

Some of Lenox’s recent funny moments:
* While going through clean laundry she pulls out Liz’s bra, puts it on with the cups on her back and says “look, Lala, its a back pack”
* as many of you know Lenox doesnt like many of the medical staff coming in over and over and bothering her. Today a nurse came in, said she just needed to check her port, which Lenox showed her, the nurse touched it once, nodded, no small talk and left. As she walked out Lenox said: ” what was her name? I liked her alot”.
* we bough ceramic reindeer salt and pepper shakers and Lenox likes to play with them (they are empty). She broke the head off of the green one. The red one, unbroken, was next seen dramatically wrapped in tons of scotch tape. When we asked why, she said that would keep it from breaking like the other one. Nice preemptive idea instead of being more careful!

Moms in the Margins: thanks to Liz’s motivation, we are both doing the “couch to 5K” training program. Liz does it more diligently than I do and I have been so proud of her and impressed with her commitment. We have a slate of 5K’s and other runs identified to keep us motivated. Lenox is very into “exercising” and serves as our coach, most usually riding in her stroller, but occasionally also running. Otherwise, things we do are typical to all families at this time of year – planning thanksgiving, buying holiday gifts, getting out decorations, enjoying the changing weather, etc. As we get closer to January, where Lenox transitioning back to school at least partially, I had started thinking more about how to relay to the teacher so much information and considerations about treatment issues, what to watch for, etc. Of course, when I mentioned this to our wonderful doctor, she allayed my concerns. The clinic at Dell deals with it all the time and they actually come meet with the school and teacher for just that purpose – to share info and areas of concern or special need issues that might arise. That was a big relief. As you may recall, Lenox’s school has been amazingly supportive and I am so grateful that she has such a great community to return to and to be reminded that there lots of professionals who are “experts” on how to help Lenox as a student too.

I feel I am constantly aware of how blessed we are. I know I share about that often – great friends, family, employers, etc. A few weeks ago a friend of mine used the adage “everything happens for a reason” and we just don’t always know what it is. She pointed out that the reason may be bigger than us (our nuclear family) because just through knowing about Lenox it had helped her be more grateful for the health of her kids. She said that if many of our friends and acquaintances had the same reaction she did, then that was a big impact in helping others keep focused on gratitude and what was important in life. Essentially “I realize I am blessed b/c I know how hard what you have been given is”. I wasn’t offended by this and was actually appreciative to hear her view of it. Interestingly, yesterday I met a family here that I had so much empathy for and also gratitude that we were not in their situation. They are here with a 5 month old, with multiple intestinal and ovarian tumors – her tumors are rare enough that after surgery, biopsy and being here a week they still have no diagnosis of what cancer she has. They have a 3 year old at home, live almost 2 hours away AND are teen parents. I was so overwhelmed by them – they were friendly, engaged, mature and direct. The little girl’s name – for those who may want to pray for her – is Payton. She was actually very smiley and inquisitive and seemed to not be in discomfort.

One last thing of interest is that we are meeting with the wish-makers this Saturday from the Make aWish (MW) foundation. I should immediately address the misconception I had about them, b/c you may have it as well. I thought kids only got wishes if they had terminal illnesses so when the clinic mentioned it, we were like “oh no way our girl is not terminal”!!! But the program is for kids with life-threatening illnesses, NOT terminal illnesses. Once that sunk in (thank you Courtney for that conversation!) we thought we would at least check it out. So we will keep you posted.

Kudos and gratitudes: I have finally been sitting down to write thank you notes, and I am just overwhelmed again by everyone’s support! I am daunted by the sheer volume of notes this entails: ) but glad to be sitting down and revisiting how broad our support network has been from the very beginning.This time for the blog, while there are many friends and family who deserve perpetual thanks, I wanted to specifically shout out thanks to two of our immediate neighbors:
* to Stephanie and Julie (ak the Chalkasaurus) who left a cute note for Lenox on the porch with two buckets of chalk (cool!) and for putting out our garbage and recycling every week, and
* to Michele and Sadie for being ever-nearby and for rushing out for a plunger when we had a houseful of people!!

We love you all!

FLASHBACK entry: July 11, 2011

17 Nov

Intro (repeat): I realized today that my “journal” entries from our first three days of finding out were on the iPad but that I had never posted them. I found them today and decided to post them. I can’t backdate – as far as I know – so they are just posted with today’s date as three flashback entries. They are verbatim from what I wrote then and I didn’t tone them down, as they are accurate to that moment. I am so glad to no longer be feeling the devastation or anger that the entries reflect and finding them today really emphasized for me how normal this has all become and how surmountable it also feels. Entry follows:

Jul 11
Can this really only be day 3? Our baby had a rough day. They went to take us down at 7 or so for her 8 am procedure but they had given her a bit more platelets and she spiked a fever again. On the way they gave her benadryl since the platelets were having an allergic reaction. She got really bad cold chills. They needed a chest x ray which was hard b/c she was chattering and shivering so fiercely. They ended up delaying her morning procedure, and when we got back she vomited a bit. They took us down again around 11:30 to still proceed with the spinal chemotherapy, spinal draw and marrow aspiration so that we could get a full diagnosis. Few poignant / tough moments today – I was looking thru some pics with lenox and she saw one of the chapel at St georges from the Xmas show. She said “that is a picture of me and god” — wow. Father Kevin came for a first visit and prayed with us, chatted and blessed Lenox. It was a nice visit and good prayer. Tough questions so far – can I go to school tomorrow, can Cooper come swim tomorrow, cant i please go home, i dont want to be here, and worst mommy, why does my body hurt? She tells us over and over her body hurts. We got her diagnosis today – she has the “regular” or more mainstream leukemia ALL. It was odd as they discussed this as though it’s a good one and I get that it is, its better than a worse case scenario but my girl still has LEUKEMIA! She will lose her hair over the next 4-6 weeks, will be ill for at least six months and I think the hardest to hear was that if all goes well she will be treated for 2 and a half years! She will be 6 YEARS OLD before we get past this — god oh god she better live to be 6 and 16 and 36 and on and have a long old bratty life! Jodi brought us a gift and had lunch with us – couldn’t have been better timed, she came as we got to the cafeteria and we were paged from surgery midway through eating. She was able to stay with our food and then we came back and finished eating. She also brought us hoovers dinner for Liz and I, and Lois came with fried cheese and pasta for Lenox and also ran to the house with Liz. Thank god for our friends and family.

FLASHBACK entry: July 10, 2011

17 Nov

Intro (repeat): I realized today that my “journal” entries from our first three days of finding out were on the iPad but that I had never posted them. I found them today and decided to post them. I can’t backdate – as far as I know – so they are just posted with today’s date as three flashback entries. They are verbatim from what I wrote then and I didn’t tone them down, as they are accurate to that moment. I am so glad to no longer be feeling the devastation or anger that the entries reflect and finding them today really emphasized for me how normal this has all become and how surmountable it also feels. Entry follows:

Jul 10
Lenox had her first blood transfusion today and platelets. They told us during the day today that she would go in at 8 am tomorrow under anesthesia for the marrow biopsy, spinal tap to see if it’s in her spine, place a porta cath and they said also to do a chemotherapy treatment in her spine. Until the biopsy we don’t know enough details to start treatment. After her platelets she got a fever up to 103.9 so they needed to take a blood culture. They couldn’t do it via her IV tube b/ c it cant be assured of it’s sterility. They also don’t know b/ c of the fever whether we will still be able to do the procedure tomorrow. Hate not knowing. My greatest fear as a parent has always been seeing her in pain and today it happened. They tried to take her culture and it wasn’t working. The first guy dug and dug into her arm looking for a vein and even the second time when it worked they had to dig. She was in so much pain – her eyes rolled around in fear and pain and panic. She kept screaming that it hurts and ” i need a bandaid”. It was so grueling and heartbreaking to watch. I held her and soothed her and tried to be calm but inside I was screaming! I totally lost it afterwards by myself – parents should just Never Ever have to go through that. Afterwards as she was calmer but very subdued I asked her how she felt -sad, mad, blah – and OMG she said ” I am happy”. How stoic and brave – how could she feel that way? I love her so much. Felt bad today too b/ c she wanted to leave so badly at one point and sat down and cried to leave the hospital. Fuck, shit, omg my poor, sweet fab baby! Why her!

Carly, grace and rose came today. Grace totally uplifted Lenox. Thankful! Also Chris G. came and got jones – thank god don’t have to be worrying about him.

FLASHBACK entry: July 9, 2011

17 Nov

Intro: I realized today that my “journal” entries from our first three days of finding out were on the iPad but that I had never posted them. I found them today and decided to post them. I can’t backdate – as far as I know – so they are just posted with today’s date as three flashback entries. They are verbatim from what I wrote then and I didn’t tone them down, as they are accurate to that moment. I am so glad to no longer be feeling the devastation or anger that the entries reflect and finding them today really emphasized for me how normal this has all become and how surmountable it also feels. Entry follows:

Jul 9, 2011
Today I was told my baby girl has leukemia. Nooooooooooo! She is 3 years and 5 mo old and this just CAN’T be true! Dr. Brown from our pedi office called as we were coming back from the pool. We were still on the front steps , not even in the door, and the news dropped me. She said straight out that Lenox’s bloodwork from her well child ( checking for iron deficiency or anemia) showed she had leukemia and a pediatric oncologist was waiting for us at Dell children’s hospital as we spoke. She was so apologetic b/c she isn’t our doctor and said she hated to have to give us the news when we didn’t even know her. I just can’t even describe the devastation that call evoked. She said be prepared to be admitted. Liz and I sobbed as we urgently packed a bag. The doctor here at Dell said Lenox will need a spinal tap and bone marrow biopsy to formally diagnose and ID what type of leukemia and that will be Monday morning. Her blood readings though indicate 99% liklihood of leukemia. She is so confident that Lenox has leukemia that when we go in for the tap and biopsy, which require anesthesia, they are also putting in a porta-catheter. They will get the official results back Monday afternoon and then may start treatment as soon as Monday night. They said she will likely be here at least a week and then the next 28 days will be really rough intensive chemotherapy and then treatment the next 6 months. She can’t attend school for 6 months either. I am so overwhelmed at the idea of the pain she is going to go through. I don’t see how any parent can endure watching their baby in pain or discomfort;and knowing it will be the case for 6 months is just unfathomable. I alternate between dealing with the facts and tasks and feeling to floored to function – between cold emotionless paralysis and excruciating fear for Lenox. I have never ever loved a person as I do Lenox and she and I are oddly close – I really think I won’t survive if we can’t beat this. It’s just too much to grasp – from the emotions to the stats and science, to fmla and leave, and Jonah and then it’s just not possible to speak to family without a total sobbing breakdown. Lenox is sooooooo amazingly stoic – we told her her “blood was sick and we would stay here like it is a hotel so they can make her blood well. She has been so brave and even interested in what they do to her. She was so upset about the IV going in and cried and said it hurt for about 30 mins but then seemed to just be more curious and gentle with it and less in discomfort. I know in another day or so she will be so done with this place and I dread when she asks if she can go home. This is going to be so much worse before it can get better. I think I am going to go to bed – after this longest day of my life so far – and see if it was all a horrid evil mix- up. It must be right? It just cannot be that our Lenox had leukemia. Just no!

Hospital Visit 4 Play by Play – day 3 through Discharge – It’s a Wrap

29 Oct

Day 3 Starts Thursday 6:30 am.
Reminder: her 8:45 pm methotrexate blood level is 5.86.
7ish: Few diaper changes. Doc comes by to check on her – Lenox grumpy and grunty. Doc Says she will see us in the morning tomorrow so looks like no discharge planned for today.
10:30 am – Lenox and Liz sleep until almost 10. Lenox up changed, brush her teeth, and she eats a little breakfast. Is watching Grease.
Lazy chill day mostly – no nap for Lenox but lots of movies.
Great friend drops us off Torchys Tacos for lunch and a fun art project for Lenox- thanks Kate!
2:30: take 2nd blood draw but as pushing through the last bit of saline Lenox throws up on herself and Liz. Have to cover her port to give her a bath. While in the bath we give the first leukovorin (42 hours from when chemo first started). Get her bathed, dressed and nursing student changes all the bedding. Liz showers too.
We give her another bit of zofran with juice this time to avoid the saline.

Around 7 pm we get our 2:30 blood results back – she is at 0.28 and we have to be at 0.20 or lower. Close but no cigar! They will do her 2nd leukovorin at 8:30 pm (48 hrs from chemo start). They will do blood draw again in the morning and said we can hopefully do an early discharge (meaning probably before noon). Sweet!
Just ordered East Side Pies for dinner.

Similar to night before, We are up until about midnight for meds, etc.
3:00 am: vitals and diaper change.
3:30: air in line – get nurse, she fixes.
4:00: Lenox’s bum hurting and itching – change the paste she has on her bum.
4:30: they come in to do her blood draw and do IV Zofran. She gets upset, has a lollipop but almost throws up again. Back to sleep again.
8:30 am: I wake up and check with nurse. Our new methotrexate level from this morning’s draw is 0.06! Yeah. She says doc is on way to do discharge visit.
Doc comes to check in on us, says we are good to go. We pack up the room and Liz starts packing a cart to go to the car. Nurse brings actual discharge papers.
Now for the tough part – getting Lenox deaccessed from her port. Nurse is patient and we very slowly remove the window covering her butterfly and then the nurse pulls out the butterfly. A few tears but after tears she says it didn’t hurt really. Another successful visit! Her counts look good upon discharge so Halloween and Trick-or-treating hopefully a go! Yeah! As we leave, she walks out on her own. We stroll through 4 North slowly and she chats and smiles with the nurses giggling and talking about her Halloween costume. We all have smiles as we leave the hospital at 10:40 am Friday. 4th Visit Done!

Hospital Visit 4 Play by Play – day 2

29 Oct

Day 2 Starts 7:30
7:35 am – Liz and Lenox asleep and the room is dark. Med team RN quietly comes in to listen to heart lungs and tummy and Chats with me a bit. I Try to sleep but can’t, but its so nice and quiet – I work on the blog post and play words with friends.

Around 9 Lenox awakes next to me giving me great hugs and snuggles and kisses.Vitals again and I change her diaper again. We wake Liz around 9:30 and come down to the cafeteria again for breakfast. She runs down the hall pushing her pole on her own. She is in great spirits, giggling and chatting. Get to the cafeteria right before closing. Yeah! She whispers in my ear that she loves me and She whispers sweet “anythings” to lala. After breakfast which she didn’t eat much, we go back to the gift shop (yes, again!) And then to their library where we color, read and check out 2 movies we didn’t have at home. As we head back to the room Lenox is still in great mood and rides on her IV pole. The IV poles have 5 low flat wheeled feet. She stands on two of them and holds onto the pole while I push it. She shimmies and wiggles as she rides down the hall with her big dark brown chemo bag sways crazily. Huge grin. Get back to her room around 11:15. The nurses joke they almost sent out a missing person search for us. I change her diaper and she gets more zofran. Now we are chilling on the pulled out sofa while she watches “invasion of the tinysauruses”.

Around 1:30 nurse comes to check rate of chemo progress; she says we will finish too quickly at current rate so we slow it down. On target for wrapping up around 8:30. Lenox is chilling but happy and loving. 2ish Liz just went to grab some lunch for us. Doc on hospital duty comes by and listens to Lenox’s heart, lung and tummy sounds and touches base with us. Lenox doesn’t want the lunch we got her brings and wants soup instead. She tells us that she will not ever ever ever snuggle with either of us any more until we bring her soup! After I finish eating, around 3, I go to get her soup and when I return about 5 mins later from the microwave in the family kitchen, she is asleep on the divan. Liz relaxes next to her and I take a great long nap.

Its 6:15 pm and I am up now, Lenox is still asleep, Liz dozed off. They gave her more zofran; 6:15 I change her diaper. She awakens and we play w dinos and squinkies on a blanket on the floor while La snoozes.
7:40: Lenox is having some broccoli and soup and jello, sparingly, while watching a video — Brother Bear — we checked out from the library. We bring tons of movies from home but these are fun b/c they are new to her.
8:15: finishes eating and start 2 hours window for the 6-MP.
8:30: chemo done. Uneventful. Have kept her on zofran for nausea but seem to not be affecting her too badly. Switch to just fluids.
8:45: they give her zofran again and take her first post- chemo blood levels. Has a lollipop with the Zofran to combat the saline taste so 2 hour clock pushed back to 11. Will take a few hrs for blood results. Goal is that she has to have a methotrexate level in her blood of 0.20 or lower before discharge. To get there will do a combo of leukovorin “rescue” and fluids.
9:15 pm – I straighten up room a bit. Lenox and la in the hospital bed watching Brother Bear again and I am chilling on the Divan.
Give MP-6 at 11:00.
In the middle of the night We get her 8:45 pm blood count level back – its 5.86. That is good for this point in time. Looks on track to be down to 0.2 on or before friday. Hasn’t had leukovorin yet.

4 am vitals. I get up and move aside but Lenox sleeps thru.
6:30 am: CA wakes me up to check her diaper. Soaked, and so are the sheets. Change her diaper and clothes. Lenox sits on some pillows sleepily crying while I change the sheets. Before her head hits the pillow she is back asleep. Thankfully. Both back to sleep.

Note: Liz has been fighting a bug and the naps and the extra sleep for her is needed – that part of this visit summary isn’t typical of our normal visits. We usually both get similar rest on these visits.
End of Day 2

Hospital Visit 4 play by Play – Day 1

27 Oct

Oct 26, 2011 12:43 PM
Since many of you tell me that you like getting a sense of what we are experiencing, I thought I would do this 4th hospital visit as a daily “play by play” from start to finish of a “typical” one of our chemo hospitalizations. May seem filled with minutiae or mundane but thought I would give it to you just the way our days go.

Monday Night before — pack our bags and bedding. Toys, movies, clothes, diapers, paper plates, soups, utensils, etc. 3 suitcases total – our leanest trip yet (I know crazy right?!).

Tuesday October 25
Awoke today at 6:15 – slipped some numbing cream on Lenox while she was asleep and covered with Press and Seal (our version of “generic”). Running a few minutes late for our 7:30 appt. We park at the hospital and walk over to the clinic, arriving at the clinic at 7:40 am. All 3 of us get “bracelets” (ID bands) since we are being admitted. In waiting room for about 15 minutes – they call us back and in the ante room, they check Lenox’s vitals (blood pressure and temp) and weight. We are taken back to room 11 which is the Runtex Room. Every room at the clinic has a theme or sponsor. The Runtex room has life size wall mural of kids running.

Getting her port accessed is the worst part for Lenox and we have told her she could have 2 gifts if access goes smoothly. As pre-planned with the nurse Karen (per Lenox she is Doctor Karen) we hold her down and Quickly access her port – no negotiations or stall tactics. Lenox is distressed and fought it but it went far more quickly at least. Good access and got blood from the port quickly. She remains accessed. We Wait… Results back. Good counts 1850 ANC so a go for day surgery. We have never had to postpone for low counts but it is not uncommon we are told.

Karen checks Lenox’s bracelet before med disbursement and then gives Zofran (anti-Nausea med). Follows with a saline push. Lenox is very sensitive to the saline and can taste it as it goes through her port. Imagine your mouth suddenly tasting like ocean water. She gets a lollypop to suck on to counter the salty mouth. She is only supposed to lick the lollipop since she is going under anesthesia. Lenox eats the lollipop – oops. But she grins. This has the potential to delay the Procedure but thankfully it doesn’t. We Wait… We get a Visit from Dr. Wells (our oncologist is out today). Lenox grunts at him. He listens to tummy, heart, lungs, and checks ears, nose, throat. We Go over her current meds with him and confirm what is to be done while under anesthesia. We remind him about needing pentamidine after admission and the flu shot while under. We Wait….

At 9:30 we are taken over to the hospital. Lenox rides in our stroller. We go through a tunnel that connects the clinic to the hospital. It’s neat and we have fun making loud noises – there is a great echo down there. We are taken to PANDA – PANDA is Pre Operative Admission Nursing Discharge. Still nothing to eat for her or us. We are all Hungry and thirsty. But good spirits. Lenox is being a super love bug kissing and hugging and giggling. We are In room 17 – like all the pre-op prep rooms down here it is a smallish 8 x 8 room with no bed just few chairs, TV and rolling computer. Our medical chart (a 3 ring binder) follows us everywhere. We are told we are number 2 in line for surgery – Awesome. Lenox is now in her gown and watching Angelina on the dvd player. Nurse 1 enters – again vitals, heart rate, basic info, etc. Checks bracelet. Goes over meds again. Lenox is pleasant and says the pulse checker is like a band aid. Nurse asks if we are going home after – no, we clarify that we are being admitted. Wait…anesthesiologist comes in. Checks meds again, asks few questions, we remind her that Lenox should get her flu shot while under. She Leaves. A Child life worker comes in. Asks if we Need anything – no. She Leaves. Waiting. 10:20. Lenox hasn’t eaten since 8:30 pm night before. Nurse comes in for us to Sign consent forms. Wait.

11:15: 3 gowned med staff appear and it’s time to go suddenly. Lenox says she wants to walk, but she gets spooked by them and cries. Lala holds her as we walk into the procedure room and holds her as they give her IV anesthesia. She totally Knocks out in Liz’s arms.We leave and go Into the waiting room at 11:20. I run to cafeteria to grab us coffee and tea and snacks while Liz waits in the surgery waiting room. Dr comes by our seats in the waiting room at 12:00 to let us know that it went fine – she got her flu shot while under and the intrathecal lumbar puncture (this was chemo into her spine ). She Still is not up yet – they will come tell us when she is awaking. We are Called back at 12:10. The Recovery room is one big room with about 12 beds. A separate nurse is dedicated to each bed. Upon entering we Wash hands and go over to her bed. After a lumbar puncture she has to be kept inclined head down for 30 minutes; by the time we get there the 30 minute incline is done; She isn’t up yet so we sit next to her and watch her sleeping. They have removed her oxygen but she still has all the monitors, pulse rate tracker, etc. We Get our room assignment – 419. We Request saltines and popsicle so she has them as soon as she is up – she is always hungry when she comes out of anesthesia. The recovery nurse assigned to us today calls up to 4N (the oncology ward) to “transfer” Lenox’s status and info via computer and orally. She Awakens partially and is very grumpy. Around 1:00 She rides in my lap in a wheelchair up to her room. The attentive 4N nurses overwhelm her as they try to get us settled in, her vitals and her weight and height again. Her mouth tastes horrible so we try to remedy it (popsicle, gummy bears). At 1:30 Liz has headed down to get the luggage while Lenox starts to doze snuggled against me in the hospital bed. We Got her more Zofran b/c we can’t tell if her mouth “being funny” is weird taste or nausea. We wait for her first fluids. Ironically she can’t start chemo until her urine shows its “basic” enough (as opposed to acidic) meaning she is sufficiently hydrated. We Can’t test for it until she pees but b/c she had no food or drink pre-surgery this morning she is low on fluids and not needing to pee. Hence all the IV fluids. We put cotton balls in her Pull-Ups so they can extract and do the test even if she goes in her diaper. Lenox doesn’t like the cotton balls in there so we have to sneak them in.

Fluids started at 1:45. Liz is back. We call in some Jason’s delivery. Lenox Snoozing. 2:15 they start pentamidine – this is a monthly med to prevent mouth sores that is in lieu of a previous one that had tasted horrible and was 3/week. Now is 1/ month by IV. I have set up the sleeper sofa as a “Divan”. Lenox has been sleeping the whole time and Liz is resting too. I Changed her diaper (Lenox’s, not Liz’s) but there was not enough urine in the cotton balls to measure, so more waiting. Lenox woke around 5 pm and while Liz is napping, Lenox and I go down to the “cafamateria” for a quesadilla and lemonade. Cruising w her pole – it has a low handle bar so she can push it herself. Fun time – we played “I spy” in the cafeteria and she ate well. Went to the “The Tree House” the hospital’s gift shop. We have shelled out major bucks at this place since July. She pees in her diaper while out and about. Hoped it would be enough in the cotton balls to test. They gather it at 6 or so; at 6:30 pm still no word whether we met the criteria to proceed. Lenox and Liz now chilling and watching a dino BBC show on our player on the “sofa” while I lay in the hospital bed. Waiting…

Ends up the CA (clinical assistant) didn’t log the cotton balls she tested and then they had a shift change so they couldn’t try to recreate it. After much coercion and bribing (she got to open 3 presents from the Carson’s – TY!) Lenox went pee in the “hat” for the first time (which makes it truly “testable”) at 7 pm. hooray it was a PH of 8 (had to be greater than 6.5). So they just gave her zofran (anti-nausea med) in anticipation of starting the chemo. Chemo in these visits is a 24 hour IV drip of high dose methotrexate. They first do a 30 minute drip to prepare her body and then after that they hook her up to another 23 1/2 hours. While she is on the chemo and after, They will test her urine and blood the whole way along to be sure it isn’t “too” toxic and that her body is metabolizing it sufficiently. They also measure and readjust the drip rate the whole time – the exact amount of chemo has to take exactly the allotted time – no earlier and no later so they keep tweaking. Around 8:15 they came to start the first 30 minute push but they first have to confirm the line is still working – we have had problems with her port always cooperating. Ugh it didn’t work at first — but after getting Lenox to stand up and wiggle and flap her arms – tada, it worked thankfully! Otherwise it would involve messing with the “butterfly” (the external access to her port) – a Lenox nightmare. Sigh of relief – at 8:25 they started the first push. It’s 9 pm now and we are into the big chemo bag finally!

Lenox also daily at home takes a chemo drug called mercaptopurine (6-MP). It has to be at night and has to be at least 2 hrs after any food or dairy. We were about to hit our 2 hour mark at 9 but Lenox asked for some soup, so clock reset to 11:30. This isn’t IV but one we mix and have to get her to drink. Lenox picks to sleep with me in the bed – love it! About 10 minutes later she says no she wants to sleep on the divan with LaLa. Doh – cheated! They stay up playing until 11:30. Brilliant Lenox does a puzzle for 5 and up. Around 11:30 her IV beeps — air in line. Get nurse — she fixes. I mix her 6-MP with OJ and it takes us until 12:15 am to get her to take it b/c the juice is a different brand and tastes “wrong”. We Leverage her still being up by having her potty in the hat, get her midnight-ish round of vitals done by the CA and the nurse checks her blood return again (they do this off/on during chemo to make sure line is working well.) Got blood, but she spits during this b/c saline tastes bad so got extra zofran. She has me Lay down on the divan/sleeper sofa with her around 12:40 am. We sleep til we have another zofran push at 4 am – also I change her diaper.
The Lulling rhythmic metronome of the IV pump and white noise of the centralized air handler compete with cries, bangs, and nurses dialogue nearby. Lenox sleeps like a rock these chemo nights as though her body just settles her into a deep protective sleep while it takes this big hit.

At 7 am, another diaper change and at 7:30 there is air in line. I call the nurse and she fixes it.
End of day 1 (1st 24 hrs)

Halfway Recipe

20 Oct

You know the old saying – the same amount of liquid in a  cup can be a cup half full or a  cup half empty depending on whose looking at it. Well, our cup is half full – tomorrow marks the exact mid-way point of Lenox’s 133 days of Consolidation. Much as making a perfect brew of Polyjuice Potion takes time, Consolidation is like a recipe:

Recipe for Slaying the Leukemiasaurus — Consolidation

  1. Take one fabulous little girl intent on slaying the leukemiasaurus (check)
  2. Take two doting moms – a mohawked Lala and a red-streaked Mommy (check)
  3. Add 3 planned hospitalization chemo treatments in which Lenox metabolized her chemo like a well-hydrated dynamo (check)
  4. Add half of her office visits and half of all her home meds (check)
  5. Add a dash of hair retained (yeah!), more than a pinch of Cure Search Parade, a dollop of cousin loving and trampoline jumping, (check)
  6. Add several cups of “solutions” – including better remedies found for medicine alternatives she will actually take and some magical butt paste (check)
  7. Add a whole bottle of lemon juice and a whole bottle of lime juice, with a tiny bit of sugar (check – this is Lenox’s favorite “recipe” to make and does it several times a week — no, none of us drink it :))
  8. For full flavor, mix in some tears, some Zofran to make sure the brew doesn’t upset your tummy, and several major cases of the giggles (check)

Stir, shake, jump, jiggle, giggle, cry and laugh til all mixed together. After it turns a palish white with several streaks of green (aka Lenox Lauper) follow with the remaining steps.

  1.  Add 3 remaining planned hospitalization chemo treatments in which Lenox will  laugh and play and try to run over the nurses in her “car”
  2. Add all remaining office visits and home meds for this phase of Consolidation
  3. Add a dash of great hats, more than a pinch of Halloween party, Trick or Treating, holiday decorating and baking endeavors
  4. Add friends, family and visits from an Elf and Santa Clause, Search Parade,
  5. Add consistent trampoline bouncing and bike riding
  6. Add several cups of “solutions” – including (I pray) a better way for her to get through her weekly port access (which devastates her and is getting increasingly more traumatic)
  7. For full flavor, mix in some tears, more Zofran, many more cases of the giggles
  8. Add one last major Dinosaur Roar on December 25 AND….

Stir, dance, somersault, jiggle, giggle, cry and laugh til all mixed together. After the oncologist confirms that the recipe is complete (estimated time December 26) we will have a complete well-cooked and incomparable Consolidation Phase.

Per Lenox:Halloween costumes – Lenox is going to be either Sandy (with LaLa being Danny) – from Grease; OR will be Quidditch Harry Potter with Mom as Luna Lovegood and Lala as either Mad Eye Moody or Hagrid. Happy Halloween All! Thanks, as always, for supporting us!

Getting to Know the Nadir…and Lenox

27 Sep

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Quote: “If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think
about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell.” ~Lance Armstrong

Lenox & the Leukemiasaurus: So this week we got to know the practical  of nadir and the immediacy with which Lenox’s condition can fluctuate. In last week’s post the new lexicon word was nadir – the point at which white blood cell counts will get their lowest. For the high dose methotrexate that we had by IV for 24 hours on Tuesday the 13th, the nadir was 7 days. For those first few days after discharge all went great. But on Monday she threw up and like nadir clockwork, on Tuesday night of this past week, we had our first real moment of questioning whether to take her to the hospital. She was clammy, had chills, was dehydrated and had diarrhea.  More distressing for us, was that she just laid on the sofa limply – awake but disinterested, which is such a departure from her normal demeanor that we couldn’t help but think something was very amiss.

So we took her in – Lenox was not happy about having to go to the hospital on such an impromptu basis, but she was a trooper about it. We were there for less than 24 hours, of which Lenox slept quite a bit; they got her re-hydrated and on a dose of antibiotics in case it was an infection. (Liz has wittily dubbed this  the 10,000 nap). They tend to pre-empt determining whether it is or isn’t an infection and just treat as a precautionary as though it is an infection. I kept questioning whether we should or shouldn’t have brought her in feeling like paranoid first-time parents – were we overreacting?  But each doctor and nurse assuaged those concerns and said it was good we had brought her in. They are fans of erring on the side of caution – a parent could hope for nothing better from their medical  responsiveness.  Lenox was pretty quickly back in the swing of things – good counts, having fun and playing, sassy as ever and giving more and more brilliant jokes and commentaries. She is still into dinos and Harry Potter as much as ever, loves to run around quoting Ron Weasley with a quite British enunciation of “Bloody Hell”, and now is a fan of Grease. She likes to play with her toy horses and one is Sandy and one is Danny. She is getting her days of the week down better and loves to tell everyone than on her next birthday she is turning 14.

On Saturday we attended the CureSearch Walk, which raises funds for children’s cancer research. It was at the Mueller Lake Park. Lenox blew us away by riding her bike all the way over to the walk start (about a mile) and then she rode her bike, ran or walked all of the walk (another 2 miles). She had her face painted, laughed a lot, played with her close friends Delilah and Cooper and some of her favorite grownups. She threw a lovely Lenox-style hissy fit about not being able to get both cheeks painted (the lady could only do one side when she had a line) and then quite stubbornly waited next to the face-painters table in the hopes that the line would diminish (to no avail).  The team Love for Lenox, raised over $7,000 and came in 3rd place at fundraising. Lenox got a medal and had some great pics taken with the Mayor and the Chief of Police. More than 30 people came and walked with our team – neighbors, classmates, teachers, friends, co-workers – it was so uplifting and heartwarming to know how supported we were, with those walking and so many who could not attend but donated. Lenox had a memorable day and told us as it was winding down, “Can I have another parade tomorrow?” She keeps talking about the donuts and juice and parade today. It was also nice to see all those other families dealing with this same “new normal” but outside the hospital or clinic. We plan on doing it even bigger
next year so plan ahead for walking with us and putting some of your tax write-off deduction toward our great cause :)!

Moms in the Margins: Liz’s Mohawk is awesome! I think Liz will be posting some pics on here from the walk and you will see her awesome new do as well as some of the great photography that she and her friends took. There is a great event called St. Baldricks that Liz is preparing for – it funds promising research for  children’s cancer and supports survivorship activities. Check it out: http://www.stbaldricks.org/ .

I had a weird let-down today from the walk. The joy and excitement of the walk  ebbed and the sadder reality of the day hit me. Nothing to drive home to you being a member of the Cancer Kid parent club than an event like that. While 95% of the time I have now accepted what is happening and am just positive, solution  and about “fighting like hell” to use Armstrong’s words; but today I had a 5% moment where I felt sad again about being in the club and so heart-broken for the families who were there to release balloons, representing their child’s cancer fight lost. I am so proud of Lenox for her wonderful attitude and her resilience, but felt dispirited to be in the position of even needing to feel pride for how fabulously our 3-year old is fighting cancer.

Sobering Statistic: Each year in Texas, almost 1,200 children and adolescents younger than 20 years of age are diagnosed with
cancer. Approximately 200 children and adolescents die of cancer each year,  cancer the most common cause of disease-related mortality for Texans 0-19 years of age.

Kudos and Gratitudes:

Thanks so much to all the walkers and donors for the CureSearch Walk. Thanks for a wonderful event and making Team Love for Lenox such a success!!!!