Joe & Karin Hawk
Last Tuesday (11/19/13) Sydney’s ANC had been at zero for 5 days straight. Her doctors were suspecting that she would not begin to rebound until early the week of the 24th. Well again, our little girl surprised everyone and Wednesday her ANC was 323, Thursday 1510, and Friday over 2600! Her doctor stated that they are impressed at how strong her marrow is and that once it starts to regenerate, it just skyrockets! With her numbers increasing so rapidly, she was discharged and able to go home!! This is a major milestone in her course of treatment and marks the completion of the three inpatient High Risk Blocks.
Sydney will begin her next round of treatment, called Reintroduction, on December 2nd. This block will be as an outpatient in the clinic. A new experience for Sydney, as up to this point she has received all her chemo treatments while she has been in the hospital. December 2nd will be quite an eventful day as she will have an operation to insert a new port, pull her PICC line, spinal tap with opening pressures and IT chemo, bone marrow biopsy and up to the clinic for her chemo.
But for now we are unpacking our bags and enjoying being home for an extended period of time. With Sydney doing well and our families remaining healthy, we are proceeding on with our normal Thanksgiving plans -spending lots of time with the Hawk and Friday Families. We are all looking forward to our first normally celebrated holiday in 2013!
Thanksgiving has an entirely new reflection for Joe and me this year. We are incredibly thankful for the generous financial support we have received from family, friends, neighbors, coworkers and strangers. We are grateful for all the continued prayers for Sydney’s healing and recovery. We truly believe they have made a substantial difference! For the medical teams that have worked with Sydney throughout the course of this year, we have immense gratitude. And we are eternally grateful that God has spared our daughter’s life, that she is still with us, and He will continue to protect her as she fights this terrible disease.
May you and your families have a blessed Thanksgiving! We will!
Joe & Karin Hawk
During the past two weeks Sydney has received the high dose chemo drugs for this high risk block. It began with the HD ARA-C. As mentioned before, this drug is 20 times stronger than the high dose she received in September. While receiving the HD ARA-C, and for 24 hours after, Sydney had to receive eye drops every 6 hours. These are to protect her eyes from this chemo, but this was quite a tortuous process. It took 3 people to administer these drops – one to hold, one to pry open her eyes and one to do the drops – all the while Sydney was screaming. While on the HD ARA-C, Sydney received steroids and continuous Zofran to help with nausea. The steroids sure did change our little girl. She was not her normal happy self, had frequent mood swings and wouldn’t really speak to anyone. The nurses said that a grown man on steroids had nothing on this 4 year old little girl – watch out!
Already, by Wednesday, 11/6 Sydney’s appetite was gone. This was one of the side effects of the HD ARA-C. She ate nothing and only had a few sips of water and milk for 3 days. Friday 11/8 Sydney had an LP to test her opening pressures and receive chemo into her spinal fluid. Her opening pressures were 38 - the highest in months. Her doctor isn’t concerned because clinically she is doing well and not displaying anything to be concerned about and there are many contributing factors that may have an impact on the pressures during the procedure. Finally on Saturday, 11/9 she was hungry again and began eating a bit. Her appetite continues to come and go, but she is eating at least one good meal a day. Sunday, 11/10 Syd received IVIG. This a transfusion of antibodies. She handled this well, with no reaction.
Sydney finished up with her last chemo, a shot of Erwinia, on Wednesday, 11/13. Wednesday her ANC plummeted from 1400 to 180. All the other blood numbers followed the downward trend in the next couple of days. Sydney received a transfusion of platelets on Friday and a red blood transfusing on Saturday.
Friday, 11/15 Sydney’s ANC hit zero and has now been there for 4 days. Despite receiving the daily Nupogen, Sydney does not have any Nuetrophils. These are the cells that make up white blood cells.
Monday, 11/18 Sydney had her G-tube changed. Her pain over the past few days indicated that this change was necessary. The new tube was increased two sizes!
We continue to pray that Sydney will remain fever and infection free during this highly susceptible period. We greatly appreciate your continued prayers and support.
Joe & Karin Hawk
Sydney’s re-admission was delayed a week due a cold. Because of the delay, she was able to enjoy another week at home playing with Sissy Addison and going Trick-or-Treating. Sydney was, of course, her favorite character, Nala! See new picture added to the gallery.
Sydney was admitted on Monday (11/4/13) and began the most difficult of the high risk blocks. This is the third and final of the high risk treatment blocks which are administered as an inpatient stay. Most of the rest of Sydney’s treatments for the next 2 years will be outpatient in the Clinic. During this block Sydney will be receiving the strongest chemo yet: high dose ARA-C. She received an HD ARA-C in September during the first block, however this dose is 20 times higher. Sydney’s doctor has told us a multiple of times that he expects this to be extremely hard for her and he is not expecting her to come through as smoothly as she did with the first two blocks. Her body and marrow are beat up and these chemo meds are by far the strongest.
For several months, Sydney has been plagued with extreme itchiness under her ostomy waiver and PICC line dressing. Monday night it finally came to a head. Sydney was scratching at the newly changed PICC line dressing. All of this scratching pulled up the dressing and the stat lock holding the PICC line into her arm. At 2:30 am Tuesday morning, it was determined that the PICC was not central and was no longer functional for administering chemo. The night team of doctors was scrambling to determine what to do with her fluids, continuous anti-nausea meds and next chemo dose coming up at 5:00 am. They finally determined it was safe to continue to run everything - except the chemo. The chemo would be stopped until the PICC line could the rethreaded or a port inserted. Sydney was to go to IR (Interventional Radiology) first thing this morning, but that turned into a 2:00 pm procedure. This little girl never once asked for something to eat or drink the whole morning or afternoon. That is AMAZING for a 4 year old! Fortunately, a new PICC line was able to be rethreaded and the procedure was successful. Sydney now has a new double lumen PICC. (Her previous lumen was a triple inserted when she was in the PICU and was then necessary for the numerous antibiotics and pain meds for her infections.) Once back to her room, she was put back on schedule to restart her chemo plan for this admission.
Let’s just hope that Sydney got all the excitement out of the way for this admission within the first 24 hours! We pray for the remainder of this intense block to be event-free and infection free. We truly appreciate all of your prayers for Sydney.
Joe & Karin Hawk
Sydney is home again for another short break!!! She came home on Wednesday, October 16. This marks the completion of the second high risk block of treatment. Sydney will be re-admitted on October 28th for the third block and hopefully be home in time for Thanksgiving.
Thank you for your continued prayers!
Joe & Karin Hawk
Day 7 (October 3rd) Sydney began Nupogen, the drug to accelerate the production of white blood cells. Five days later (October 7th) Sydney had severe leg and back pain. She was screaming and writhing in pain. She was put on a 3 hour rotation of Oxycodone and Tylenol. The cause of the pain with the Nupogen building new white cells on the existing cells and pushing on the inner lining of her bones. The Nupogen was discontinued and the pain subsided by October 9th. The Nupogen would not be restarted until her ANC was 1000 or lower.
Since then we have just been waiting for Sydney’s numbers to bottom out, which has not really happened yet. Her hemoglobin and platelets got low, but came up on their own – she never needed any transfusions. Her white blood cells and ANC have very slowly trickled down, but her ANC had not yet gone under 1000 to this point. The doctors suspect that if Sydney’s numbers were to have gotten much lower, that it would have happened by now.
Tomorrow, Sydney is scheduled for an LP (spinal tap). During this LP her opening pressures will again be measured and chemo (Methotrexate, ARA-C and Hydrocortisone) will be administered into her spinal fluid. This will be the first time that she has received chemo into her spinal fluid since experiencing the issues with the Hydrocephalus. Very little chemo from the spinal fluid will enter her blood stream and therefore her counts are not expected to be impacted. The doctors will monitor her counts closely for the next couple of days and decide if Nupogen should be restarted in the hospital or at home. At home it is a shot that we have to administer, so we really hope that it is NOT necessary! Fingers are crossed that in the next day or so Sydney will get to go home again for a short break before beginning the third block of inpatient treatment.
This hospital stay continues to be very difficult emotionally for Sydney. She cries daily that she misses home, her bed, Sissy, doesn’t want Mommy to go….We are trying to do our best with keeping things as eventful and normal as possible with activities, and visits from family in the hopes of keeping our little girl’s spirits up. Sydney has had many visits from her grandparents on both the Friday and Hawk sides of our family. Many trips to the playroom with Grammy and Pappy; art projects and baking with YaYa; and Eve, Rachel and Aunt Emily surprised Sydney with a play date – Sydney was thrilled! And of course days are always better when Sissy visits! Take a look at the gallery for some new pictures.
We have been blessed that so far this block has been infection free and continue to pray that it and the future continues as such.
Joe & Karin Hawk
Sydney and I left the house at 6:15 am on Thursday for her re-admission to Children's. Sydney had to be in the Radiology Department by 7:00 am. She was having an LP to test opening pressures and a tracer fluid injected into her spinal fluid for the CSF scan. The LP went well. Sydney’s opening pressure was 30. However, it didn’t take much fluid to be withdrawn to get her within normal 10 to 20 range. (I did learn that the various vent settings can play into the levels of her pressures. And with all the different LPs and all the different anesthesiologists, the settings would not all be consistent.) The nuclear med people did an immediate scan and then one at 2 hours and again at 4 hours. It was quite neat to see the flow of the tracer during the scan. We were able to see at the 2 hour scan that there was tracer in her brain already. After the 24 hour scan on Friday we learned that Sydney’s flow is NORMAL! For now there are no immediate plans to discontinue or reduce the Diamox.
After we were finished with the 4 hour scan on Thursday we had to go to the Admissions Office and wait for a bed to open up. Finally around 5:30, I finally got word that there was room for Sydney. She was being sent to 9a - the opposite side of the building which she has had most of her stays. There we got to visit with some of the nurses and the PCT that we befriended when Sydney was initially diagnosed. Sydney began her pre-chemo hydration around 8:00 pm and then her first chemo drug around 3:00 am. This drug runs for 24 hours. So far she is handling it well. Sydney and I were exhausted and slept well! Early Friday morning I learned we were moving to 9b. Sydney and I quickly packed up and moved over to the Oncology Wing (9b) where everyone is familiar with her case. Sydney will get to see all her nurse friends and go to "her" playroom! After a busy Friday, Sydney fell asleep next to me on the couch waiting for fireworks from the "Giant Rubber Duck" party at the 6th Street Bridge. Good thing she fell asleep because - No fireworks! Friday night's sleep wasn’t very restful because her pull-up needed to be changed every two hours due to the hydration for the chemo. Sydney is now in Day 2 of her 6 days of chemo. She is continuing with the steroid. Her weight is holding steady at around 43-44 lbs. and all her numbers remain good. Sydney is continuing to eat pretty well. She had an active day in the playroom Saturday and did a lot of walking around the unit. She is really beginning to pick up the pace when she is going around the unit. Sydney had a nice nap, but woke quite sad-missing Addison, not wanting to be in the hospital, and wanting to go home. Her mood brightened when Joe brought in her trike! Sunday was filled with joy as she peddled her trike around the unit and played with Sissy in the playroom!
Sydney's counts remain good today as she enters Day 4 of this intense chemo block. We can only pray she stays infection free!
Thank you for all your support!
Joe & Karin Hawk
Sydney had been questioning, “When am I going to get to see my cousins?” So, Sunday we spent the first day of Fall at Simmons Farm with the Friday side of our family. We enjoyed a hay ride to the pumpkin patch, where all the girls picked their pumpkins and Indian corn; played on old tractors, a fire engine and slides; wandered through a hay maze and swung on a tire swing. "It was a great day!" said Sydney as she and Addie fell asleep on the way home!
Thursday, Sydney will be re-admitted for her next/second block of treatment. She will go straight for a spinal tap and CSF scan. This scan will tell us how well the spinal fluid flows. A tracer will be injected into her spinal fluid and then a series of pictures taken every few hours to determine how far the tracer has moved. With Hydrocephalus, there is poor flow due to the increased pressure. If Sydney is still having these issues, the tracer will not go far at all. The purpose of this study is to determine if Sydney can resume receiving chemo safely during her spinal taps. If the tracer shows good movement, this will begin again with the next spinal tap. Once the scan is complete, Sydney will be admitted to the 9th floor to begin the pre-chemo hydration process. We are praying for an event free and infection free second block!
Thank you again for your support!
Joe & Karin Hawk
Today brought relief to us as Sydney's labs came back negative. The doctors agreed that the concern was a contaminated draw. So we packed up again and left Children's Hospital for home! Only this time we need to have Sydney on iv fluids for 12 hours at night as she sleeps. It is hoped that this extra hydration will help with her diarrhea. Home Care nurse came tonight to train us on the fluids and the pump. Results from the Allegheny County Health Department finally came in: negative for Norovirus.
We'll do whatever it takes to be under our own roof! We're happy to be together!
Thank you for your prayers.
Joe & Karin Hawk
The hospital called the house to request Sydney come back as there was a positive culture for infection. So Sydney was readmitted back into Children's Hospital on Saturday after many hours in the ER. We will get the results of the last culture today, Monday, to determine if the initial culture was contaminated or if there is infection. In the mean time, Sydney is being treated with antibiotics. Still no results from the Allegheny County Health Department regarding the Norovirus test.
Sunday was a marvelous day for us as the entire Bridgeville community came together to hold a Spaghetti Dinner to benefit Sydney. We cannot find the words to express our heartfelt appreciation to our community, church, neighbors, family and most of all the strangers who came to support our daughter. She is a stranger to most, but is loved by all! We are humbled.
You are in our prayers.
Joe & Karin Hawk
The past few days have been a whirlwind for Sydney and us! Her ANC counts rebounded so fast that the doctors were overjoyed and, to our surprise, issued the immediate discharge papers. So yesterday, Wednesday, September 11, 2013, she was DISCHARGED!
In our last update we wrote about Sydney's g-tube issue. The redness and tenderness around her g-tube continued so an antibiotic, Cypro, was ordered. Sydney immediately broke into hives. Cypro was removed and Benadryl eased the itchiness. However the doctors believed the g-tube was too small for her body now that she had a 7 pound weight gain. On Tuesday they replaced it with a larger tube. Quite painful for Sydney. It is hoped that this new tube will relieve the redness and tenderness.
Wednesday was the rush to pack, get the meds for home, and meet Addison at the bus top. What a surprise for Sissy! We all enjoyed being together under our roof for a little bit. Later last evening Sydney spiked a fever and had to go to the ER at Children's. After x-rays, blood work and other tests, it was determined the source of the fever was a reaction to the flu shot she got before she left the hospital. So after another discharge we arrived back home at 5 am! Now we're home again until Sydney is readmitted on September 24th for another 21 day block. Until then, days of being together will be cherished!
Thank you for all of your kindnesses, especially your prayers.
Joe & Karin Hawk
Sydney’s spinal tap last Wednesday (9/4) showed amazing results!!!! Her opening pressures were only 23! So she was only slightly above normal levels; high side of normal being 20. Three weeks ago her pressures were 32.5 and here initial pressures were 42! The Doctor which preformed the LP was so excited with the news that he actually ran back to Sydney’s room to tell us of the new, not realizing that he ran right passed Joe on the waiting area. The official read on the MRI showed no significant change; neither improvement or worsening. But with her pressures so close to normal, all believe the issue with absorbing the spinal fluid could be resolving itself. Continued plans the long term use of the Diamox and the frequency of LPs still need to be discussed with Sydney’s primary Oncologist.
Saturday (9/7), Sydney’s counts began to plummet. She received a transfusion of platelets early Saturday morning and red blood transfusion on Sunday afternoon. Her ANC has been fluctuating under 100 since Sunday. The doctors believe that we will see a continued fluctuation for a few days. She will not be discharged until her numbers are steadily increasing for 3-4 days.
We are waiting for one final test on her stool. She tested negative for C-diff and parasites. The third test was sent to the Health Department to test for the Norovirus. Results aren’t expected until the 13th. The Health Department only does the tests once a week, maybe twice if they have a lot of requests. All still believe that the diarrhea is a result of the chemo, but she will remain in isolation until all tests are negative.
Sydney has developed some redness and tenderness round her g-tube site. The doctors are not overly concerned, but have started her on an antibiotic to be extra cautious. Other than this, she has remained infection free and we continue to pray for that during this susceptible period.
Joe & Karin Hawk
Sydney completed her six straight days of chemo on Sunday night. Now we are waiting for her counts to drop and then rebound before being discharged. She was given the drug Nupogen Monday night. This med helps to facilitate the production of white cells at a faster rate. It will not prevent her from becoming neutropenic, but will hopefully minimize the length of time without immunity while providing her some cells to fight any onset of infection.
Sydney developed a mouth ulcer yesterday. This is a side effect of the Methotrexate. These can be quite painful. Syd was given IV Tylenol, but the doctors indicated that most kids need something stronger for the pain, like Morphine. So far the sore has not impacted her eating. Hopefully it is just an isolated sore and no more will develop. Yesterday’s MRI and LP was cancelled due to an increasing heart rate and lower than normal blood pressure. The doctors were not comfortable with Sydney receiving anesthesia with these conditions. Possible causes of these conditions are dehydration or the beginning of an infection. Her counts have not yet been impacted so all are leaning towards dehydration. However, doctors are being extra cautious and cultures were drawn and Sydney was started on an antibiotic. After receiving two boluses of fluid, her heart rate and blood pressures were back to normal.
This morning her heart rate was slightly elevated again, so Sydney was given more fluids. She was headed for the MRI and LP at 10:30 this morning. Sydney has not complained of a headache since before her last LP on August 14th. And at that time her pressures were still elevated. However, not as much spinal fluid had to be removed as in prior LPs to get her to normal pressures. So we are hoping for more positive results today.
Even though Sydney has handled the chemo remarkably well, this stay at the hospital seems a lot harder on Sydney emotionally. She is missing being home A LOT. Even though the last stay was so much longer, it's like she didn't remember home, because she never asked about it. This time is quite different. After almost a month of sleeping in her own bed and playing with Sissy, she cries a least once a day; saying that she misses home, her bed, Sissy and whichever one isn't here Daddy or Mommy.
For now we continue to pray for an infection free hospital stay. Thank you for your prayers during this susceptible period!
Joe & Karin Hawk
*Good news! The results of the bone marrow biopsy showed no leukemia or Philadelphia chromosome for now.
*Saturday was such a special day for our families as TEAM HOPE FOR SYDNEY participated in the CureSearch Walk fundraiser at Schenley Park, Pittsburgh, Pennsylvania! Children's Hospital became a sponsor this year. CureSearch for Children's Cancer is a national non-profit foundation that accelerates the cure for children's cancer by driving innovation, eliminating research barriers and solving the field's most challenging problems. CureSearch fights every day to make treatment possible and a cure probable for the 36 children diagnosed with cancer daily. We celebrated and honored children from the Pittsburgh area who have been affected by children's cancer. Sydney was among the Heroes honored! We were thrilled to have Child Life Specialist Rachel, Nurse Curly Ashley, interns, doctors, and the Director of Services for Oncology join us on this walk! Thank you for spending your day-off with us! Next year we hope to extend an invitation to join TEAM HOPE FOR SYDNEY to all our friends. We discovered how wonderful this organization is for children who have no voice to ask for help.
*This is the last weekend we will be sleeping together at home for a while. Sydney will return to Children's Hospital on Tuesday for the first of three 21 day chemotherapy treatment blocks for ALL and Philadelphia chromosome. Please pray for a complication-free stay! And for Addison, who will be separated from her sister yet again.
Joe & Karin Hawk
Sydney has now been home for 2 ½ weeks and it has been absolutely WONDERFUL! We all are having a great time just being together under the same roof and having our lives have some semblance of normalcy! Since the first night home Addison has been sleeping on an air mattress in Sydney’s room. Not wanting to be separated from her, Addison now says that it’s her room too. We will be getting a set of bunk beds! The girls didn’t miss a beat. They were right back to playing with their baby dolls shortly after we were home. They were pushing them in strollers with their dress up hats and purses; pretending they were off shopping and talking in their “mom” voices. It was great to see and hear that our house again. It had been too quiet for much too long. We have enjoyed all the other normal things which we always took for granted; cooking dinner and a lot of grilling, eating them at the table on the back porch, enjoying the summer sunshine, talking walks around the neighborhood, playing and swinging on the swing set and celebrating Joe’s birthday at home! Hopefully next year we will be celebrating all four of ours at home!
Trying to keep up with Addison and just getting around the house and up and down the stairs is really strengthening Sydney. She is also receiving in-home PT three days a week. She is marching around the kitchen table forwards and backwards, doing ballerina tippy toes, knee lifts and lots of strengthening exercises. Walking on the yard has been very challenging with the uneven surface. While walking in the grass, Sydney pace has picked up a bit, but she cannot yet do it unaided.
Upcoming events we are looking forward to are Eve’s 6th birthday party, another play date with cousins, and the CureSearch Walk on Saturday, August 24th. CureSearch celebrates and honors children whose lives have been effected by childhood cancer, while raising funds for lifesaving research. We have created team Hope for Sydney and the Hawk and Friday families are walking in unison to support our precious little girl. Weather and health permitting, Sydney will be there too. Please join us in this cause. Visit www.suresearchwalk.org/pittsburghfor event information.
While at home, Sydney’s ANC bottomed out last week around 260. Fortunately, she made it through that low period without any issues. As of yesterday her counts are back up to 1890. Wednesday, Sydney had a spinal tap. These are regularly scheduled every two weeks to test her opening pressures and drain any excess fluid. Wednesday’s pressure was still elevated and brought back down to a normal level. She also had another bone marrow biopsy. Those results are expected next week. Readmission is scheduled for August 27th. At which time chemo will begin immediately after many hours of hydration. This next block will be the hardest and most toxic yet for Sydney. It will be six straight days of chemo; the first drug running continuously for 24 hours. She is expected to have her counts bottom out for a longer period of time and take longer to rebound during this block. Therefore, making her inpatient stay around 21 days if all goes well.
For now we are enjoying each of the remaining days at home with our girls.
Thank you for your continued support and prayers!
Joe & Karin Hawk
Joe & Karin Hawk
Sydney's chemo for the Induction 1B block finished up on Tuesday. So far her counts have been slowly decreasing. Her hemoglobin was a bit low and she had been acting a bit sleepy, so she got a transfusion on Saturday. She responded nicely to the transfusion and was full of energy today! Next big thing is another LP (spinal tap) on Tuesday to relieve any excess fluid and reduce the pressures. Other than that we are just waiting for her counts to bottom out, pray for no infection during that time and for her numbers to rebound quickly.
Monday, another replenishment blood drive was held for Sydney. This one was at the Scottdale Fireman's Hall. Marcy Braunstein from the Central Blood Bank had the following to say about the success: "What a wonderful day! An unbelievably 85 units of blood were collected including 5 double red cells and another 15 people attempted to donate but were deferred for medical reasons. There were at least 100 people presenting to donate blood yesterday. As you may know, once the blood was taken back to the lab last night, each unit was separated into three components—red blood cells, platelets and plasma---which means over 250 blood products will be made available for patients in area hospitals.
But the success of the drive far exceeds the numbers. The outpouring of love and support for the Hawk family was overwhelming. Scottdale might be a small town but it has the biggest heart! I couldn’t believe how many folks continued to walk through those doors all day. Sharing Sydney’s story once again motivated so many people to step forward to give the gift of life—many of which had never donated blood before or hadn’t given in a very long time."
Saturday KinderCare (Sydney's daycare facility) and Fox's Pizza held a fundraiser for her at their Bridgeville and Carnegie locations. It was such a wonderful day! The outpouring of love and concern for Sydney in our community is overwhelming. We can only say, "Thank you, thank you!"
Joe & Karin Hawk
Sydney's has had a wonderful weekend so far! It started off with Sissy spending the night Friday, which was probably enough excitement! Of course Sydney started the sleep over with watching Lion King, followed by playing dollies, riding the trike around the unit and falling asleep to Peter Pan.
Saturday was the highlight of all! After 135 days in the hospital Sydney was able to escape a few hours. It was the "GREAT BREAKOUT FROM 925!" Several days ago some of the CLO cast of The Little Mermaid came to visit the children on 9B. Sydney's door opened and entered Ariel - Syd's favorite princess - Prince Eric and entire camera crew! However, Sydney was much too shy to even make eye contact with Princess Ariel. An autographed program and 4 tickets to Saturday's matinee were left on her bed. Child Life had arranged for this wonderful visit and had asked Sydney's doctors if she might be able to attend the performance. As long as her counts were "ok" she could get out of the hospital for it. Saturday's results came in and Sydney was told of the "BREAKOUT!"
Saturday morning Addison and I told Sydney she was getting a pass to leave the hospital and to see the Little Mermaid. I don't think that she really knew how to react. So there was no reaction. But once we were on the way and in the car she had a big smile on her face! We were off around 12:15 and stopped at McDonalds on our way to the show. Sydney was excited to have her nuggets, fries, apples, and chocolate milk. Don't worry, we went through the drive through and ate our lunch in the car in the parking garage! Once done we got Syd's mask on and we were off to the show! We stopped at the fountain and the "eye benches", enjoyed the fresh air and took some pictures. Then into the theater.
We had amazing seats, orchestra center left, row W. It was an amazing production! Addison was really into it! Sydney sat on my lap for the whole show. It think that she enjoyed it, however it was a bit loud for her. She was ready to go at the intermission, but we were able to convince her to see the end. After the show we waited in the park with the fountain again for the crowd to disperse. Threw come coins in the fountain and enjoyed being outside. Of the whole day, I think that Sydney's favorite part was seeing different things and just being somewhere different. She really enjoyed being in the car with all of us and so did I. That was the first time since March 3. Even though the show was amazing, Joe and I enjoyed having our little daughter out of the hospital and doing something as a family together - even if just for a few hours, it was wonderfully precious! Hopefully very soon there will be many more of those days to come!
As this tale was coming to a close, Sydney wanted to stop at McDonalds again for dinner. We told her only one McDonalds a day. Then she promptly asked for Wendy's! After a big laugh, we promised to bring her some later in the week. Once back in 925 and out of her dress and snuggling with Nala, she fell sound asleep. Hopefully dreaming of a brighter tomorrow - Day #136!
Joe & Karin Hawk
MEDICALLY: Tuesday, 7/16 Sydney had another spinal tap because she was complaining of headaches over the weekend. Opening pressure was high again 38.5 (normal pressures are between 10 and 20). So in just a little over a week pressure was elevated again. Doctors suspect this is Sydney’s “new norm”. This is not comforting and we need to have more discussions on this: Should the Diamox be increased again? Is there anything else in addition to the Diamox that can be used? What happens if she has headaches when her counts are low? What are the impacts of long term increased pressure? Is this “new norm” going to be permanent or is there hope that this will correct itself over time? All questions we have to ask and have answers given!
Sydney’s iv is only being utilized for two medications: her antibiotic and Zofran (an anti-nausea med on as needed basis). Her iv fluids were discontinued earlier this week. All other meds are administered via her G-tube (tube in her belly). This is really setting her up to be able to go home for a “break” once her counts rebound from this round of chemo!
All counts are still good. Not suspecting that they would start to drop again until next week after the ARC is started again on Friday, 7/19.
SPIRITS AND REHAB: Sydney continues to be cheerful, silly and ready to play with all her friends (nurses, PT and OT). She looks forward to their visits every day! She continues to get stronger and more confident by the day- walking more and more without assistance, particularly in the playroom.
Sunday, Addison came in to play all afternoon and the two of them had a wonderful time! Sydney was so excited for her Sissy’s visit. She had the entire day’s events planned – first to the playroom to play with their babies, then lunch in the sunroom and then back to the playroom. Of course Sydney started asking before 7 AM when Addison was going to get there! It is going to be fantastic to see her progress while at home and with Sissy all day! Sometimes sisters can be the best medicine!
Thank you all for your continued prayers!
Joe & Karin Hawk
Monday's spinal and MRI postponed from 1:00 to 2:30. A long wait for this little girl. Sydney handled the extubation for the MRI and spinal well. She woke in the recovery room and sucked down 8 oz of apple juice. Dr. Randy (primary oncology doctor) came in after the spinal was complete and said her spinal fluid pressures were still elevated, but not as high as before. He was able to get the pressure down to a normal level, which he was not able to do previously. So does that mean that she is now absorbing some of the fluid herself or that she just isn’t producing as much because of the Diamox…? Not sure. When Syd was back in the room she wanted all meals: starting with breakfast, then lunch, and finally dinner - all at once! After Dr. Randy, Dr Jakacki came in to discuss the MRI. The results showed improvement. Some of the lesions on the brain are smaller! This is good news!
Tuesday the pediatric ophthalmologist was consulted to test the pressure behind her eyes. The exam determined that there was no pressure build up behind her eyes. Good news on that front! Infectious Disease (ID) team will have a meeting on Friday to discuss Sydney's case and recommendation for antibiotic usage. There is still no conclusive answer regarding the cause of the pressure increase, increase lesions in her brain and increased respiratory rate. Very frustrating not being able to identify the root cause!
Friday the 12th, Sydney will restart this block of chemo treatment. Oncology has made the decision to continue Sydney on the antibiotic through this block and until her counts recover regardless of ID’s recommendation. They want to remain overly cautious. Sydney will not receive any chemo in her spinal column during the last portion of this block. The Neuro team strongly recommended to not put anything in her spinal column which may have the slightest potential to increase pressures and force them into a situation where they have to put a shunt into her brain to relieve pressure. Oncology is heeding their word and holding off on that until her brain is clear. Syd will have another spinal tap two weeks from the last to measure the pressure and another MRI will be done after her counts recover from this block of treatment.
Nutrition is pleased with Sydney's calorie intake, guess it's the corned beef, potatoes, and carrots, so much that Syd's feeds have been discontinued! Now her IV fluids are a 12 hour cycle over night. Now Sydney is not attached to the IV pole during the day and is able to freely to play, walk, climb without worrying about tangling in the tubes and gain independence and confidence. She did drop a few ounces of weight. This was to be expected.
There are two more weeks remaining in this block and then a recovery period (at least 2 weeks). Then Sydney will be discharged for a few weeks of a much needed break for all of us! Keep your fingers crossed all goes well!
Joe & Karin Hawk
Another holiday has come and gone and Sydney remains in the hospital. Even though she wasn't picnicking, Sydney celebrated the 4th of July in style. She was happy to show off her red, white and blue dress and sparkly red toes while she walked down the hall holding Mommy's hand. She loves the complements! Sydney feasted on a not so common 4th meal; corned beef, potatoes, carrots, and a little chocolate chip cookie! This was her specific request, prepared by Ya Ya. Her appetite is really picking up and she is gaining weight nicely. Hopefully she will be able to be off the overnight tube feeds soon! The goal is 1200 + calories per day for this to occur. Sydney had a perfect view of the City of Pittsburgh's fireworks display from her hospital room window. She enjoyed the display with Mommy, Ya Ya, Pop, and her favorite "goodnight time nurse" Ashley.
Friday marked a big step in Sydney's physical recovery. While working with PT she took several steps without holding anyone's hand! PT assigned Sydney specific homework for the weekend: practice walking by herself! She can do it. She just needs to overcome the fear of falling and regain her confidence. Saturday evening Sydney practiced her homework and walked about ten feet unaided! Showing off for Daddy, Uncle Eric, Aunt D and Uncle Steve.
Monday Sydney is scheduled for another MRI and spinal tap. Then we should know if she is well enough to continue on with her chemo or if she needs longer to heal. Since the MRI and spinal on June 21st, Sydney has only complained of three headaches. The most recent being Friday evening. Friday night Sydney also had a chest X-ray due to increased respirations and heavy breathing. This is a side effect of the Diamox - increased CO2 levels. But with this and her white cell counts reaching above the high end of the normal range (17.5 normal 17), the doctors wanted to be extra cautious. Amazingly, the X-ray showed slight improvement from her last; with increased air flow in both lungs! Saturday morning's labs showed her white cells counts were back into the acceptable range (15.3). Sydney likes to keep everyone on their toes! And the doctors are staying in front of everything. They said with any other kid they would wait a few days before taking these extra measures. We certainly like the extra cautious approach better!
More to come on Monday after the results of the MRI and spinal. Please pray all is well!
Joe & Karin Hawk
ON THE MEDICAL FRONT: Sydney's treatment remains on hold. Her fevers are gone, but the source of her headaches has been determined. Last Friday Sydney had another MRI, and after receiving word Friday night that the MRI was clear, we were thrilled and shared the supposed good news with our family. All to have it ripped out from underneath us Saturday morning. The results of the MRI were not clear. Sydney's ventricles showed slight enlargement and two of the lesions from her previous infection also showed a slight enlargement. This was quite concerning and extremly upsetting considering that just less than 24 hours earlier we were overjoyed that all was well with Sydney's brain.
Enlarged ventricles are usually the result of increased spinal fluid pressure. So Sydney went for a spinal tap Saturday night. The doctors were astonished with how amazingly tolerant our little girl had been because her pressure was quite high. They drained 15 ccs of fluid and the pressure was still on the high side. This has alleviated the headaches temporarily, but is not a permanent solution. She was immediately started on a medicine (Diamox) to reduce the amount of spinal fluid her body produces. Now we have to wait and see when she gets her next headache. Sydney has a standing spot each morning in the procedure center in case she has headaches thoughout the day and night.
What is the cause of this? That is an excellent question....we have been told that there are a few possibilities, but unfortunately they are all theories and no one (the oncologists and infectious disease doctors) knows. Sydney's spinal fluid was sent for cultures for bacteria, fungus, and tests for leukemia. As of now the cultures for bacteria are negative, but she was on an antibiotic so they may never show positive. Fungus can take a month.
The plan now is to take it day by day and see when the next headache is. Go for another spinal tap if and when necessary. Another MRI and spinal are scheduled for July 5Th.
SPIRITS AND REHAB: Through all of these terrible headaches Sydney has managed to continue to remain happy, silly, and just wanting to have fun! She is truly a bright beacon of joy in the hospital. Just the other day Sydney started walking without her walker and only holding a hand for support! It is wonderful to walk down the hall holding my daughter's hand!!
June 25Th marked the half way point to Christmas and the hospital celebrated by bringing each child a sack of toys! This place is amazing with all they do to keep the kids spirits up!
Thank you to all that continue to keep our little girl in your prayers!
Joe & Karin Hawk
*Sydney has had to have a pause in this 28 day chemo treatment first due her low blood counts and most recently due to a fever and frequent headaches. Doctors are trying to figure out the cause. A broad range antibiotic has been started until the source can be determined. This pause extends this treatment block into July. Hopefully the source of the fever will soon determined so this phase of treatment can continue. Karin and Joe are preparing Sydney's bedroom as they will soon welcome her home for a week or two at home! Then they will go back into the hospital for another 21 day treatment, home again for another week or two, and finally return to the hospital for the third 21 day treatment. This is the plan, all contingent upon how Sydney responds and the level of her counts.
*PT/OT having Sydney working on gross motor skills by climbing out of bed, onto the sofa, and trying to get down and up from the floor. She has been standing for short periods to paint/color pictures to wall. She is pushing the walker around Unit and chatting to her nurse friends. Yesterday she peddled a short distance on a trike to view a penguin visiting from the Aviary!
*Nutrition Team is pleased with her calorie intake and is suggesting cutting back her nightly feeds from 10 pm to 7 am. Her fluids will continue as she is not taking as much as she should during the day. Fluids are necessary to flush the chemo from the kidneys. Potty training being encouraged. Stickers and a prize box are a real incentive!
Joe & Karin Hawk
*Syd’s hemoglobin was down to 6.9 so she got a transfusion early this morning. Her ANC is still at 1000. The doctor said that we are about 2 weeks from when this block of treatment will be complete and we will begin discussing discharge plans! Since her appetite is kicking in a bit he is going to talk to Nutrition regarding adjusting her feeds to hopefully have her intake more by mouth.
*Today Sydney walked from the playroom all the way to her room while “racing” her nurse Ashley. Sydney won! We really need to push the PT so that we can take her home and not go to an inpatient rehab center.
Joe & Karin Hawk
*This is Day 10 of Sydney's 28 day chemo treatment. Today she begins another round of ARA-C for 4 days. Then a rest for 3 days. This drug is known to cause fevers, so doctors are keeping a watchful eye on her. Her counts are starting to get lower, and a transfusion is likely in the next few days. But her ANC (the infection fighting white blood cells) are still in a good range. Counts re-monitored every other day.
*PT cleared her for a walker this week and Sydney was anxious to try it out! A few small shuffles from her room to the nurses desk. In all she walked about 20 feet, taking a few brief breaks and resting on Mom's knee. Sydney was sad that the walker wasn't pink and fancy, so Child Life girls helped her make it fancy! Regaining strength to support herself and walk again is tiring, but Sydney has the perseverance to try for her mom and dad and her PT/OT girlfriends!
*Children's Hospital hosted an amazing event on Wednesday, a Wizard of Oz themed Prom – Somewhere Over the Rainbow. Dresses, face painting, make up were provided to the children. Sydney of course chose a pretty pink dress and had a rainbow butterfly painted on her face. The families enjoyed music from a DJ, dancing, refreshments, and a special prom photo. Sydney managed to eat a cracker and have a couple sips of water. She enjoyed dancing in the arms of Mommy and Daddy and she even managed to bounce a little while holding their hands!
*Sydney still isn't eating. A bite here and there. Feeds are now spread out over 16 hours to help with her digestion and to avoid the vomiting. The past two days and nights she has not been sick! Fluids must run for hydration and to flush her system of the chemo drugs.
*With all that Sydney is experiencing, she is incredibly upbeat and wants to play all the time! Thank goodness for the playroom.Smiles and laughs as she plays with her visiting "friends" from OT, PT, Music Therapy, Child Life, and volunteers.
Joe & Karin Hawk
The best medicine Sydney has received at the hospital was being able to celebrate with her entire family; especially the company of her cousins and sister and being able to play with them at her Dog Bone Birthday Party! Such a heart warming sight watching the four girls playing! Sydney was happy to show everyone how her blowing practice has helped. Syd blew out her 4 birthday candles...one, then two at a time, and finally the last one! One of her doctors and nurse were part of the applauding audience!
Monday, Memorial Day, was yet another MARVELOUS hurdle! In the Playroom this afternoon Karin was getting Sydney off a little stool. Pop said to walk to Mommy. Supporting Syd to standing position and telling her to hold up her head, she shuffled 4 little steps! Her strength is slowly returning!
Sydney still does not have a desire for eating and drinking. However, with a lot of encouragement, this afternoon she did manage to drink a half-pint of milk and lick 1 spoonful of peanut butter. And it stayed down. Drinking at times still "goes down the wrong pipe" and Sydney coughs.
Today the major chemo begins.
What an unbelievable day at the Blood Replenishment Drive at Holy Child Parish in Bridgeville, PA! Fifty two units of blood were collected including three automated double red cell donations. Eight additional people presented to donate but were deferred for medical reasons. Once those units of blood were brought back to the lab they each separated into three components: red blood cells, platelets and plasma. So this blood drive will provide over 150 blood products to patients in area hospitals. And with the drive being held over Memorial Day weekend, it will make an even greater impact on the community blood supply. Many thanks to Sister Barbara Anne for making all the contacts in the community and within the school and to Lisa in the church office for tending to the scheduling of the donors, putting the flyers in bulletins and posters in the community. But most of all our thanks to the donors who gave the gift of life to strangers!
Joe & Karin Hawk
May 24, 2013
All bone marrow results returned and show no leukemia cells present and Philadelphia chromosome ZERO! However, nuclear chemo (Induction Phase again) will begin Monday or Tuesday-depends on the scheduling of 6 chemo drugs. Doctors will be vigilant with Sydney's reactions to this phase and her compromised state.
OT/PT/Speech continue daily. For a brief time Syd can hold herself up without help. She can sit on a little stool (with support) with feet touching the floor. Speech cleared her for all liquids and foods. Eating and drinking anything still poses a problem for her.
Look at the attached picture of Sydney eating her birthday cupcake! It took a few tries, but she DID blow out her 4 candles! Practice pays off!! During their morning rounds doctors, nurses, Child Life girls, and the entire medical entourage came with well wishes, presents, and then they all sang Happy Birthday to her. Sydney enjoyed a trip outside to the Healing Garden and her first visit to the Playroom! Mom, Dad, and sister, Addison, enjoyed the evening with their Birthday Girl!
The little bite of cake seems to be a norm for Sydney. Doctors believe her stomach is not use to functioning and even tho she might feel hungry, she cannot eat. A bite here and there. A sip of juice here and there. Feeds at night while she sleeps. Increasing calorie input and fluids.
Her moods seem to change quite frequently and Syd tires quickly.
Tomorrow, May 25th, the family will join Sydney in the Playroom for her "Dog Bone" birthday party! Per her request, a mint chocolate chip dog bone ice cream cake will be served! Everyone is anxious to see her blow out candles again! Sydney was able to fill the treat bags for her cousins today. She is anxious to play with Eve, Rachel, and Addie in the Playroom!
Joe & Karin Hawk
After 3 difficult days since surgery, Sydney finally smiled under the warm Pittsburgh sun in the Healing Garden at Children's Hospital with Mommy, Daddy, and Addison!
Joe & Karin Hawk
May 17, 2013, was another difficult day for Sydney's little body as she was in surgery again.
*Today's surgery was to replace the NG feeding tube with a stomach feeding tube. Oncology team made the call so anti-nausea/chemo treatments can now be given directly into stomach. It's so wonderful to see her beautiful face again! Sydney is in much pain tonight. She spent the day sleeping. No food allowed.
*Bone marrow biopsy also done today. Results early next week.
*Plastics concur that her wound is in an excellent state, so Oncology wants to begin "nuclear" chemo treatments on Memorial Day. Oncology wants to be proactive with course of treatment for her ALL.
*She is in isolation now with a suspicion of flu. Results not in yet.
*Pulmonologist says left lung is 80% scarred with infection and 20% functional. Good news is that Sydney is so young the lung is likely to reverse this state as she grows to 80% functional and 20% scarred. Isn't that amazing?
*Chest tube will be pulled in a few days.
*CT scan yesterday of lung.
*Speech cleared her to eat regular food, however still to use thickener in apple juice and milk. Syndey to have water test next week.
*Yesterday, May 16, 2013, was an amazing day for Syd: playing, TALKING (small and still raspy, but such a beautiful sound!), doing blowing exercises with pin wheels and her "pickle", eating 2-3 bites of peanut butter sandwich, OT/PT/Speech, nurses tending to her care, and teams and teams of doctor's visits .
*Addie and Joe came in with goldfish and raspberries, per Syd's request, and she chowed down on some goldfish! Perhaps 8! Sydney even got into a wheelchair for the first time to leave the walls of her room to view the sunroom and the hallway! Such a happy girl! Syd had a bite of fish for dinner, but wanted more goldfish! Had to say no at 8 pm for the hour fasting prior to chemo drug. Not surprising, she had an excellent night's sleep!
Joe & Karin Hawk
- March 5, 2013 – Karin’s birthday, Sydney was diagnosed with Leukemia. Horrific news. She was immediately admitted to Children's Hospital Pittsburgh and then tests and treatments began.
- Tests revealed she has ALL (good kind of Leukemia to have). However, genetic tests confirm she is Philadelphia Chromosome positive. It is quite rare. Joe and Karin agree to put Sydney in a study for children who have this complication.
- Within days Sydney went into surgery to have a port inserted in her right shoulder area. Chemo began. She responded as expected...nausea, mood swings, and she was extremely tired.
- With a super clean house we welcomed Sydney back to her Bridgeville, PA home on March 15, 2013, with a kitchen cabinet dedicated to her medicines and the frig too! Her soon-to-be 6 year old sister, Addison, was THRILLED to have her buddy home to play!! 3 days later Sydney spiked a fever and taken Children's Hospital Emergency Room.
- March 19, 2013 – Sydney is readmitted to Children’s. More tests. After many days it was determined that Sydney’s infection was pseudomonas.
- March 22, 2013 – She is taken to the PICU due to extremely labored breathing and increased puffiness and distention of her belly. There she is intubated and has an operation to remove the port; believed to be the possible source of infection. A broad range of various antibiotics are given to try and find one effective against the pseudomonas. Chemotherapy stopped because white blood count was ZERO. Her fevers spike and spike and cannot be controlled. Sydney is covered in ice packs. Transfusions, transfusions, and more transfusions.
- Because of the infections, she had to be removed from the study. That means she is unable to get the liquid chemo med (only to those qualifying to be in the study). Now it will take more time to mix the chemo for Philadelphia Chromosome at home.
- Sydney has a seizure and is immediately taken for a CT scan and it is confirmed. Next day an MRI to see a better picture of her brain. MRI shows emboli in her brain where the pseudomonas showered. Still fevers continue to be uncontrollable and Sydney is put on an ice bed to try and control her body temperature. Tube inserted into her left lung to drain it.
- March 25, 2013 – Finally, two antibiotics identified in the cultures that are effective against the pseudomonas. Ineffective antibiotics are peeled off. We found out that this infection showered all over her body; brain, lungs, splotches all over her skin, with a large collection creating a very large and deep wound.
- Easter Sunday, March 31, 2013 – Sydney had emergency surgery to have colostomy to divert her bowels away from her wound. More transfusions.
- Days and days passed. MRIs and other tests continued. MRI of her spine is all clear! MRI of her brain shows increased swelling and inflammation around the abscesses. This is believed to be part of the normal healing process.
- April 14, 2013 – Sydney is extubated!!!! 24 days! Addison got to see her sister for the first time since she went to the emergency room on March 18th. Karin got to hold Sydney for hours! Sydney is so weak from weeks in bed and de-conditioning that she cannot even hold her head up.
- April 16, 2013 – Sydney is responsive! She is tracking people around the room and answering simple commands like squeeze my finger.
- Sydney continues to get stronger and continues to be more responsive. She is now able to sit up in a chair and hold her head up. Swallowing tests determined that she can have thickened liquids and pureed foods.
- May 2, 2013 – Sydney was released from PICU to the Oncology unit on the 9th floor because she was able to be without the nasal oxygen cannula and the Cpap mask at night!
- May 4, 2013 – Within days Sydney vocalized (whispered) to Karin that she wanted milk! Communication is through head shaking/nodding and a chart with pictures. She wanted and ate applesauce and mashed potatoes. Feeding tube is still in as nausea still continues.
- May 6, 2013 – CT scan determined left lung not inflating. Follow up MRI of brain cancelled because respiratory status not strong enough.
- Wound continues to heal! Plastic Surgeons say that “wound healing like this will put them out of a job.” Reconstruction and skin grafting will still be necessary though. PT/OT continues. Fine and gross motor exercises. Placing feet on floor extremely painful.
- Speech exercises: blowing bubbles, pin wheel. Syd can't do/refusing to try these yet. Believe it is the feeding tube that is interfering.
- May 8, 2013 – Oncology, Pulmonology, and Surgery agreed to reinsert chest tube to try to clean out her lung. Breathing treatments continue. Observations will continue over the weekend and then decide if major surgery is needed to remove the rind outside the lung.
- May 12, 2013 – Happy Mother’s Day! Sydney is great spirits and the four of us had a wonderful afternoon together! She had a follow up CT scan this morning to determine if chest tube is effective. Results showed “minimal” improvement. Quantification on “minimal” is needed to determine if chest tube should remain.